BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Erdheim-Chester Disease Global Alliance - ECPv6.17.0//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-WR-CALNAME:Erdheim-Chester Disease Global Alliance X-ORIGINAL-URL:https://www.erdheim-chester.org X-WR-CALDESC:Events for Erdheim-Chester Disease Global Alliance REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:America/Chicago BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20250309T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20251102T070000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20260308T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20261101T070000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20270314T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20271107T070000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260630T130000 DTEND;TZID=America/Chicago:20260630T140000 DTSTAMP:20260526T031154Z CREATED:20260526T031154Z LAST-MODIFIED:20260526T031154Z UID:10001551-1782824400-1782828000@www.erdheim-chester.org SUMMARY:Peer-to-Peer Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/peer-to-peer-community-chat-11/ CATEGORIES:Peer-to-Peer Community Chats ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Peer-to-Peer-Chat-1.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260625T130000 DTEND;TZID=America/Chicago:20260625T140000 DTSTAMP:20260604T214736Z CREATED:20260604T204916Z LAST-MODIFIED:20260604T214736Z UID:10001610-1782392400-1782396000@www.erdheim-chester.org SUMMARY:Topic: Managing ECD Pain & Fatigue DESCRIPTION:Speaker: Kevin O’Brien\nRN\, MS-CRNP\, Nurse Practitioner\,\nClinical Investigator\, Genome Research Institute\,\nNational Institutes of Health\nDate: Thursday\, June 25\, 2026\nTime: 1:00 PM CDT \nKevin O’Brien is a nurse practitioner and clinical investigator at the National Human Genome Research Institute (NHGRI) of the National Institutes of Health in Bethesda\, Maryland. He earned his Bachelor of Science degree from Johns Hopkins University and his Master of Science and Nurse Practitioner degree from the University of Maryland. \nKevin has played a key role in NHGRI clinical research\, including protocol 15-HG-0006\, a clinical trial investigating dabrafenib and trametinib in BRAF-positive patients with Erdheim-Chester disease (ECD)\, as well as the Natural History of ECD study. Register Here URL:https://www.erdheim-chester.org/event/managing-ecd-pain-fatigue/ CATEGORIES:Webinars ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2026/06/Managing-Pain-and-Fitigue.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260618T130000 DTEND;TZID=America/Chicago:20260618T140000 DTSTAMP:20260526T030939Z CREATED:20260526T030939Z LAST-MODIFIED:20260526T030939Z UID:10001521-1781787600-1781791200@www.erdheim-chester.org SUMMARY:Canadian Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/canadian-community-chat-12/ CATEGORIES:Canadian Community Chats ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/download-5.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260618T040000 DTEND;TZID=America/Chicago:20260618T050000 DTSTAMP:20260526T031107Z CREATED:20260526T031107Z LAST-MODIFIED:20260526T031107Z UID:10001539-1781755200-1781758800@www.erdheim-chester.org SUMMARY:Australian/New Zealand Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/australian-new-zealand-community-chat-13/ CATEGORIES:Australian and New Zealand Community Chats ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2026/05/australia-june.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260616T110000 DTEND;TZID=America/Chicago:20260616T120000 DTSTAMP:20260526T030752Z CREATED:20260526T030752Z LAST-MODIFIED:20260526T030752Z UID:10001515-1781607600-1781611200@www.erdheim-chester.org SUMMARY:Spanish Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/spanish-community-chat-10/ CATEGORIES:Spanish Community Chats ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Spanish-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260609T130000 DTEND;TZID=America/Chicago:20260609T140000 DTSTAMP:20260526T030702Z CREATED:20260526T030702Z LAST-MODIFIED:20260526T030702Z UID:10001514-1781010000-1781013600@www.erdheim-chester.org SUMMARY:Caregiver Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/caregiver-community-chat-13/ CATEGORIES:Caregiver Community Chats ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Caregiver-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260526T130000 DTEND;TZID=America/Chicago:20260526T140000 DTSTAMP:20260506T124359Z CREATED:20260506T124359Z LAST-MODIFIED:20260506T124359Z UID:10001467-1779800400-1779804000@www.erdheim-chester.org SUMMARY:Peer-to-Peer Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/peer-to-peer-community-chat-10/ CATEGORIES:Peer-to-Peer Community Chats ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Peer-to-Peer-Chat-1.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260522T043000 DTEND;TZID=America/Chicago:20260522T053000 DTSTAMP:20260506T124230Z CREATED:20260506T124230Z LAST-MODIFIED:20260506T124230Z UID:10001449-1779424200-1779427800@www.erdheim-chester.org SUMMARY:Australian/New Zealand Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/australian-new-zealand-community-chat-12/ CATEGORIES:Australian and New Zealand Community Chats ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/12/A-N.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260521T110000 DTEND;TZID=America/Chicago:20260521T120000 DTSTAMP:20260506T124103Z CREATED:20260506T124103Z LAST-MODIFIED:20260506T124103Z UID:10001443-1779361200-1779364800@www.erdheim-chester.org SUMMARY:Canadian Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/canadian-community-chat-11/ CATEGORIES:Canadian Community Chats ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/download-5.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260519T110000 DTEND;TZID=America/Chicago:20260519T120000 DTSTAMP:20260506T123951Z CREATED:20260506T123951Z LAST-MODIFIED:20260506T123951Z UID:10001431-1779188400-1779192000@www.erdheim-chester.org SUMMARY:Spanish Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/spanish-community-chat-9/ CATEGORIES:Spanish Community Chats ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Spanish-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260512T130000 DTEND;TZID=America/Chicago:20260512T140000 DTSTAMP:20260506T123856Z CREATED:20260506T123856Z LAST-MODIFIED:20260506T123856Z UID:10001430-1778590800-1778594400@www.erdheim-chester.org SUMMARY:Caregiver Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/caregiver-community-chat-12/ CATEGORIES:Caregiver Community Chats ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Caregiver-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260430 DTEND;VALUE=DATE:20260503 DTSTAMP:20260410T173710Z CREATED:20250924T153146Z LAST-MODIFIED:20260410T173710Z UID:10000875-1777507200-1777766399@www.erdheim-chester.org SUMMARY:11° Simposio medico annuale ECD - Birmingham 2026 DESCRIPTION:L’Alleanza Globale per la Malattia di Erdheim-Chester annuncia il Simposio Medico 2026 \nBirmingham\, AL – L’Erdheim-Chester Disease Global Alliance (ECDGA) e la UAB School of Medicine invitano gli operatori sanitari e i ricercatori. \n\nSimposio medico: 30 aprile-2 maggio 2026\n\nGiovedì 30 aprile 2026\nIncontro Pazienti e Famiglie: 8:00-16:30\nLuogo: Marnix E. Heersink Conference Center presso l’Università dell’Alabama a Birmingham\nCena di Gala: 18:00-20:00\nLuogo: Hilton at UAB Downtown \nVenerdì 1 maggio 2026\nSimposio Medico: 8:00-17:00\nLuogo: Marnix E. Heersink Conference Center presso l’Università dell’Alabama a Birmingham\nRicevimento Medico del Simposio: 18:00-20:00\nLuogo: Marnix E. Heersink Conference Center presso l’Università dell’Alabama a Birmingham \nSabato 2 maggio 2026\nRiunione del Centro di Cura ECD: 8:00-11:00\nLuogo: UAB Cancer Center \nQuesto evento riunirà la comunità globale della malattia di Erdheim-Chester con i principali esperti medici per condividere le ultime ricerche\, le intuizioni cliniche e le risorse della comunità. I partecipanti possono aspettarsi sessioni educative\, opportunità di entrare in contatto con altri colleghi e aggiornamenti sui trattamenti emergenti e sull’assistenza ai pazienti. \nUlteriori dettagli sull’hotel e sui punti salienti del programma saranno resi noti nei prossimi mesi. \nAgenda\n\n\n\n\n TimeSubjectPresenter\n\n\n\n\n 8:00 amRegistration & light breakfast\n\n\n 8:30 amWelcome to Birmingham and the 11th Annual Erdheim-Chester Disease International ConferenceGaurav Goyal\nUniversity of Alabama at Birmingham\, Birmingham\, AL USA\n\n\n Keynote Address\n\n\n 8:45 am Diversity and Degeneration in\nNeurohistiocytic DiseaseNicole Coufal\nUniversity of California\, San Diego\nUSA\n\n\n 9:25 amBreak\n\n\n Morning Abstract Presentations Session 1: Cells\, Clones & Circuits: Where Histiocytosis Begins (and Persists)\n\n\n 9:35 amARAF Mutations Drive Histiocytic Neoplasms\nIn Vivo and Provide Insights into Cellular\nOriginBenjamin Durham\nRutgers Cancer Institute\, Robert\nWood Johnson School of Medicine\,\nBrunswick\, NJ\n\n\n 9:50 amTracking BRAF V600E Persistence under MEK\nInhibition in Histiocytoses: a B-cell–enriched\nsignalJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 10:05 amDistribution of MAP2K1 Variants Across\nPeripheral Blood Cells in Erdheim-Chester\nDisease and Other HistiocytosesIrena Ungureanu\nAmbroise-Paré Hospital\, Pathology\nDepartment\, Boulogne-Billancourt\,\nFrance\n\n\n 10:20 amThe Clonal Origin and Evolution of High-Risk\nMultisystem Histiocytosis in AdultsMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n 10:35 amNetworking Break\n\n\n Morning Abstract Presentations Session 2: Genotype → Therapy: Biomarkers\, Responses\, and New Vulnerabilities\n\n\n 10:50 amKRAS Mutations in Histiocytic Neoplasms:\nMutation Spectrum and Response to MEK\nInhibitionDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:05 amCyclin D1 Overexpression Drives Replication\nStress and Creates Therapeutic\nVulnerabilities in Histiocytic NeoplasmsDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:20 amClonal Hematopoiesis Predicts Response to\nInterferon-α in Erdheim-Chester Disease and\nMyeloproliferative NeoplasmsJérôme Razanamahery\nDijon University Hospital\, France\n\n\n 11:35 amImpact of Additional Genetic Variants in the\nCourse of Erdheim-Chester Disease… a\nMulticentric Longitudinal Study of 445 French\nPatientsFélicien Triboulet\nPitié-Salpêtrière hospital\, Sorbonne\nUniversity\, Paris\, France\n\n\n 11:50 amGroup Photo\n\n\n 12:00 pmLunch\n\n\n Afternoon Abstract Presentations Session 3: Pixels to Patterns: ECD and Xanthogranuloma\n\n\n 1:00 pmCentral Nervous System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:15 pmMusculoskeletal System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:30 pmPatterns of Presentation and Outcomes in\nAdult XanthogranulomaGuneet Janda\nMayo Clinic\, Rochester\, MN USA\n\n\n 1:45 pmNetworking Break\n\n\n Afternoon Abstract Presentations Session 4: Care in the Real World: Treatment Patterns and Survivorship\n\n\n 2:00 pmReal World Frontline Systemic Anti-Cancer\nTreatment Patterns and Outcomes in\nErdheim–Chester DiseaseCarla Isabel Borre\nMayo Clinic\, Rochester\, MN USA\n\n\n 2:15 pmBurden of Chronic Health Conditions After\nDiagnosis of Erdheim–Chester Disease\n(ECD): Early Results from the Histiocytic\nDisorder Survivor StudyGaurav Goyal\nUniversity of Alabama at\nBirmingham\, Birmingham\, AL USA\n\n\n 2:30 pmDestombes-Rosai-Dorfman Disease:\nClinical\, Molecular Characteristics and\nTreatment Response: data from a\nretrospective cohort of 107 patientsJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 2:45 pmConsiderations for Assessment and\nTreatment of Neuropsychiatric Symptoms in\nECDAnneka Johnston\nRush University Medical Center\,\nChicago IL\n\n\n Poster Presentations and Networking\n\n\n 3:00 pmErdheim-Chester Disease (ECD) is a Rare\nHistiocytic Neoplasm of Non-Langerhans\nCell HistiocytosisAbdalla Bowirrat\nAriel University\, Israel\n\n\n Diagnostic challenges in mixed ErdheimChester Disease and Langerhans Cell\nHistiocytosis in a 54-year-old maleSameer Andani\nMofitt Cancer Center & University\nof South Florida\n\n\n A Mycosis Fungoides-like Drug Reaction\nRapidly Resolving Following Switch from\nBRAF Inhibitor to MEK Inhibitor Monotherapy\nin Erdheim-Chester DiseaseSaipriya Ayyar\nUniversity of Cincinnati/UC Health\,\nCincinnati OH\n\n\n Multimodality Imaging in Erdheim–Chester\nDisease: Radiologic Insights from Pediatric\nand Adult CasesPriyanka Naranje\nAll India Institute of Medical\nSciences\, New Delhi\, India\n\n\n Cardiovascular System Imaging\nAbnormalities in Erdheim-Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n BRAF-Positive Erdheim–Chester Disease with\nProgressive Pulmonary and Vascular\nInvolvement Successfully Treated with\nVemurafenib: A Case ReportHulya Yilmaz Tekinhatun\nDiyarbakir Gazi Yasargil Training and\nResearch Hospital\, Turkey\n\n\n Concurrent Erdheim-Chester Disease and\nClassical Hodgkin Lymphoma with\nunexpected response to lymphoma-directed\ntherapyRebecca Denson\nNew York Presbyterian-Weill Cornell\nMedicine\, New York\, NY\n\n\n Abdominal Imaging Abnormalities in\nErdheim-Chester Disease: A Systematic\nReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n Prevalence and distribution of ErdheimChester Disease in the UK estimated from\nreferral to a National Advisory PanelMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 3:45 pmAll that glitters: retro-orbital\nxanthogranuloma or ECD?Matthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 4:15 pmThe Clue Was the Blood Pressure: Atypical\nErdheim–Chester DiseaseJithma Abeykoon\nMayo Clinic\, Rochester\, MN USA\n\n\n Closing Remarks & Student Abstract Award\n\n\n 4:45 pmECD Global Alliance into the FutureJerome Henson\nExecutive Director\, ECD Global\nAlliance\, DeRidder\, LA USA\n\n\n 4:55 pmJunior Investigator – Best Student\nPresentation AwardOshrat Hershkovitz-Rokah\nAriel University & Assut\n\n\n\n\nScarica il programma \nRegistro \nNOTA: Registrati prima del 1° febbraio per approfittare del costo di registrazione anticipato! Risparmia $200 USD e iscriviti a soli $300 USD! \nPremio Mark Heaney per la sensibilizzazione e Premio Campione della Comunità\n1 febbraio 2026 – Ultimo giorno utile per presentare la tua candidatura al premio Mark Heaney Awareness Award & Community Champion Award. \n\nInvia le tue candidature qui.\n\nPremio Mark Heaney per la sensibilizzazione. Nomina un medico che si sta impegnando per migliorare la vita dei pazienti ECD sensibilizzando la professione medica sulla malattia. \nPremio Campione della Comunità. Nomina chiunque (paziente\, caregiver\, professionista medico\, amico\, ecc.) abbia offerto il proprio tempo per contribuire a migliorare la vita di tutte le persone colpite dall’ECD. \n\n\n\nEstratti delle presentazioni orali e dei poster\n1 febbraio 2026 – Consegna degli abstract. \n\nQui si accettano gli abstract per il Simposio Medico del 1° maggio Si prega di inviare gli abstract per la presentazione orale e/o poster. Questa è una grande opportunità per condividere il tuo lavoro e quello dei tuoi colleghi. Ti preghiamo di informarli di questa opportunità. \n\nBorse di studio per viaggi\nAssistenza per i viaggi – Il Glenn Padnick Memorial Travel Fund Sta accettando le domande per la Conferenza ECDGA del 2026. \nGlenn Padnick ha vissuto una vita piena e ricca di conseguenze\, affrontando la malattia di Erdheim-Chester (ECD) per decenni. Dal 2011 al 2022 ha fatto parte con incrollabile dedizione del Consiglio di Amministrazione dell’ECD Global Alliance\, assicurando sempre che le voci e le esigenze dei pazienti rimanessero al centro di ogni decisione. \nIn onore dell’eredità di servizio e compassione di Glenn\, la sua famiglia ha generosamente istituito il Glenn Padnick Memorial Travel Fund. Questo fondo fornisce assistenza finanziaria per aiutare i pazienti\, gli assistenti e i professionisti del settore medico a partecipare alla conferenza annuale dell’ECD per coloro che altrimenti non potrebbero partecipare a causa di vincoli finanziari. \nSono aperte le richieste di assistenza per il viaggio alla Conferenza ECD 2026. I fondi sono limitati e verrà data priorità alle persone che non hanno mai partecipato all’evento. Il nostro obiettivo è quello di rendere disponibile questa opportunità al maggior numero possibile di membri della comunità con le risorse disponibili. \nScadenza per la presentazione delle domande: 1 febbraio 2026 Notifiche di assegnazione: Entro il 1 marzo 2026 \nFai domanda qui: Richiesta del Glenn Padnick Memorial Travel Fund. \nInformazioni sull’hotel e sul viaggio per la conferenza\nHotel per conferenze\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nTelefono: +1 (659) 251-1934 \nAll’Hilton Birmingham at UAB è stato riservato un blocco di camere per i partecipanti alla conferenza.\nLe camere devono essere prenotate entro il 6 aprile 2026 per poter usufruire della tariffa di gruppo. \nPrenota una camera \nSe hai problemi con la prenotazione della tua camera\, contatta Simon Hill presso l’Hilton Birmingham Downtown. Il suo numero è 205-910-1970 e la sua email è simon.hill@hiltoncom. \nTrasporto aeroportuale\nAeroporto internazionale di Birmingham-Shuttlesworth (BHM)\nDall’aeroporto di Birmingham all’hotel è disponibile un servizio navetta gratuito fornito direttamente dall’Hilton Downtown at UAB. \nPer utilizzare la navetta: \n\nRitira i tuoi bagagli.\nChiama l’hotel al numero 205-933-9000 per richiedere la navetta.\nVai alla porta #4L e aspetta l’autobus con la scritta “Hilton”.\n\nViaggiando via Atlanta\nL’aeroporto internazionale Hartsfield-Jackson Atlanta (ATL) dista circa 3 ore da Birmingham e offre voli internazionali diretti verso la maggior parte dei paesi. Sono disponibili servizi navetta tra l’aeroporto di Atlanta e Birmingham per i viaggiatori che arrivano da ATL. \nLink servizio navetta \nContatto:\nErdheim-Chester Disease Global Alliance\nEmail: support@erdheim-chester.org \nRegistro \nI nostri sponsor\n  URL:https://www.erdheim-chester.org/event/11-simposio-medico-annuale-ecd-birmingham-2026/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, 35205\, United States CATEGORIES:ECD Simposio medico,In primo piano ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Medical-Symposium-hd-v2.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260430 DTEND;VALUE=DATE:20260503 DTSTAMP:20260410T171931Z CREATED:20250924T153146Z LAST-MODIFIED:20260410T171931Z UID:10000876-1777507200-1777766399@www.erdheim-chester.org SUMMARY:11वीं वार्षिक ईसीडी चिकित्सा संगोष्ठी - बर्मिंघम 2026 DESCRIPTION:एर्डहाइम-चेस्टर डिजीज ग्लोबल अलायंस ने 2026 मेडिकल सिम्पोजियम की घोषणा की \nबर्मिंघम\, एएल – एर्डहेम-चेस्टर डिजीज ग्लोबल अलायंस (ईसीडीजीए) और यूएबी स्कूल ऑफ मेडिसिन स्वास्थ्य देखभाल पेशेवरों और शोधकर्ताओं को आमंत्रित करते हैं। \n\nचिकित्सा संगोष्ठी: 30 अप्रैल–2 मई\, 2026\n\nगुरुवार\, 30 अप्रैल 2026\nरोगी और परिवार की सभा: सुबह 8:00 बजे से शाम 4:30 बजे तक\nस्थान: मार्निक्स ई. हीर्सिंक कॉन्फ्रेंस सेंटर\, यूनिवर्सिटी ऑफ अलबामा एट बर्मिंघम\nसमारोह डिनर: शाम 6:00 बजे से रात 8:00 बजे तक\nस्थान: Hilton at UAB Downtown \nशुक्रवार\, 1 मई 2026\nचिकित्सा संगोष्ठी: सुबह 8:00 बजे से शाम 5:00 बजे तक\nस्थान: मार्निक्स ई. हीर्सिंक कॉन्फ्रेंस सेंटर\, यूनिवर्सिटी ऑफ अलबामा एट बर्मिंघम\nचिकित्सा संगोष्ठी चिकित्सा स्वागत समारोह: शाम 6:00 बजे से रात 8:00 बजे तक\nस्थान: मार्निक्स ई. हीर्सिंक कॉन्फ्रेंस सेंटर\, यूनिवर्सिटी ऑफ अलबामा एट बर्मिंघम \nशनिवार\, 2 मई 2026\nECD केयर सेंटर बैठक: सुबह 8:00 बजे से सुबह 11:00 बजे तक\nस्थान: UAB कैंसर सेंटर \nयह कार्यक्रम वैश्विक एर्डहेम-चेस्टर रोग समुदाय को अग्रणी चिकित्सा विशेषज्ञों के साथ एक मंच पर लाएगा\, ताकि नवीनतम शोध\, नैदानिक ​​अंतर्दृष्टि और सामुदायिक संसाधनों को साझा किया जा सके। उपस्थित लोग शैक्षिक सत्र\, साथियों से जुड़ने के अवसर\, तथा उभरते उपचारों और रोगी देखभाल पर अद्यतन जानकारी की अपेक्षा कर सकते हैं। \nहोटल और कार्यक्रम की मुख्य विशेषताओं के बारे में आगे की जानकारी आगामी महीनों में जारी की जाएगी। \nकार्यसूची\n\n\n\n\n TimeSubjectPresenter\n\n\n\n\n 8:00 amRegistration & light breakfast\n\n\n 8:30 amWelcome to Birmingham and the 11th Annual Erdheim-Chester Disease International ConferenceGaurav Goyal\nUniversity of Alabama at Birmingham\, Birmingham\, AL USA\n\n\n Keynote Address\n\n\n 8:45 am Diversity and Degeneration in\nNeurohistiocytic DiseaseNicole Coufal\nUniversity of California\, San Diego\nUSA\n\n\n 9:25 amBreak\n\n\n Morning Abstract Presentations Session 1: Cells\, Clones & Circuits: Where Histiocytosis Begins (and Persists)\n\n\n 9:35 amARAF Mutations Drive Histiocytic Neoplasms\nIn Vivo and Provide Insights into Cellular\nOriginBenjamin Durham\nRutgers Cancer Institute\, Robert\nWood Johnson School of Medicine\,\nBrunswick\, NJ\n\n\n 9:50 amTracking BRAF V600E Persistence under MEK\nInhibition in Histiocytoses: a B-cell–enriched\nsignalJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 10:05 amDistribution of MAP2K1 Variants Across\nPeripheral Blood Cells in Erdheim-Chester\nDisease and Other HistiocytosesIrena Ungureanu\nAmbroise-Paré Hospital\, Pathology\nDepartment\, Boulogne-Billancourt\,\nFrance\n\n\n 10:20 amThe Clonal Origin and Evolution of High-Risk\nMultisystem Histiocytosis in AdultsMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n 10:35 amNetworking Break\n\n\n Morning Abstract Presentations Session 2: Genotype → Therapy: Biomarkers\, Responses\, and New Vulnerabilities\n\n\n 10:50 amKRAS Mutations in Histiocytic Neoplasms:\nMutation Spectrum and Response to MEK\nInhibitionDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:05 amCyclin D1 Overexpression Drives Replication\nStress and Creates Therapeutic\nVulnerabilities in Histiocytic NeoplasmsDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:20 amClonal Hematopoiesis Predicts Response to\nInterferon-α in Erdheim-Chester Disease and\nMyeloproliferative NeoplasmsJérôme Razanamahery\nDijon University Hospital\, France\n\n\n 11:35 amImpact of Additional Genetic Variants in the\nCourse of Erdheim-Chester Disease… a\nMulticentric Longitudinal Study of 445 French\nPatientsFélicien Triboulet\nPitié-Salpêtrière hospital\, Sorbonne\nUniversity\, Paris\, France\n\n\n 11:50 amGroup Photo\n\n\n 12:00 pmLunch\n\n\n Afternoon Abstract Presentations Session 3: Pixels to Patterns: ECD and Xanthogranuloma\n\n\n 1:00 pmCentral Nervous System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:15 pmMusculoskeletal System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:30 pmPatterns of Presentation and Outcomes in\nAdult XanthogranulomaGuneet Janda\nMayo Clinic\, Rochester\, MN USA\n\n\n 1:45 pmNetworking Break\n\n\n Afternoon Abstract Presentations Session 4: Care in the Real World: Treatment Patterns and Survivorship\n\n\n 2:00 pmReal World Frontline Systemic Anti-Cancer\nTreatment Patterns and Outcomes in\nErdheim–Chester DiseaseCarla Isabel Borre\nMayo Clinic\, Rochester\, MN USA\n\n\n 2:15 pmBurden of Chronic Health Conditions After\nDiagnosis of Erdheim–Chester Disease\n(ECD): Early Results from the Histiocytic\nDisorder Survivor StudyGaurav Goyal\nUniversity of Alabama at\nBirmingham\, Birmingham\, AL USA\n\n\n 2:30 pmDestombes-Rosai-Dorfman Disease:\nClinical\, Molecular Characteristics and\nTreatment Response: data from a\nretrospective cohort of 107 patientsJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 2:45 pmConsiderations for Assessment and\nTreatment of Neuropsychiatric Symptoms in\nECDAnneka Johnston\nRush University Medical Center\,\nChicago IL\n\n\n Poster Presentations and Networking\n\n\n 3:00 pmErdheim-Chester Disease (ECD) is a Rare\nHistiocytic Neoplasm of Non-Langerhans\nCell HistiocytosisAbdalla Bowirrat\nAriel University\, Israel\n\n\n Diagnostic challenges in mixed ErdheimChester Disease and Langerhans Cell\nHistiocytosis in a 54-year-old maleSameer Andani\nMofitt Cancer Center & University\nof South Florida\n\n\n A Mycosis Fungoides-like Drug Reaction\nRapidly Resolving Following Switch from\nBRAF Inhibitor to MEK Inhibitor Monotherapy\nin Erdheim-Chester DiseaseSaipriya Ayyar\nUniversity of Cincinnati/UC Health\,\nCincinnati OH\n\n\n Multimodality Imaging in Erdheim–Chester\nDisease: Radiologic Insights from Pediatric\nand Adult CasesPriyanka Naranje\nAll India Institute of Medical\nSciences\, New Delhi\, India\n\n\n Cardiovascular System Imaging\nAbnormalities in Erdheim-Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n BRAF-Positive Erdheim–Chester Disease with\nProgressive Pulmonary and Vascular\nInvolvement Successfully Treated with\nVemurafenib: A Case ReportHulya Yilmaz Tekinhatun\nDiyarbakir Gazi Yasargil Training and\nResearch Hospital\, Turkey\n\n\n Concurrent Erdheim-Chester Disease and\nClassical Hodgkin Lymphoma with\nunexpected response to lymphoma-directed\ntherapyRebecca Denson\nNew York Presbyterian-Weill Cornell\nMedicine\, New York\, NY\n\n\n Abdominal Imaging Abnormalities in\nErdheim-Chester Disease: A Systematic\nReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n Prevalence and distribution of ErdheimChester Disease in the UK estimated from\nreferral to a National Advisory PanelMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 3:45 pmAll that glitters: retro-orbital\nxanthogranuloma or ECD?Matthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 4:15 pmThe Clue Was the Blood Pressure: Atypical\nErdheim–Chester DiseaseJithma Abeykoon\nMayo Clinic\, Rochester\, MN USA\n\n\n Closing Remarks & Student Abstract Award\n\n\n 4:45 pmECD Global Alliance into the FutureJerome Henson\nExecutive Director\, ECD Global\nAlliance\, DeRidder\, LA USA\n\n\n 4:55 pmJunior Investigator – Best Student\nPresentation AwardOshrat Hershkovitz-Rokah\nAriel University & Assut\n\n\n\n\nएजेंडा डाउनलोड करें \nपंजीकरण करवाना \nनोट: 1 फ़रवरी से पहले पंजीकरण कराएँ और शुरुआती पंजीकरण शुल्क का लाभ उठाएँ! $200 बचाएँ और केवल $300 में पंजीकरण करें! \nमार्क हेनी जागरूकता पुरस्कार और सामुदायिक चैंपियन पुरस्कार\n1 फरवरी\, 2026 – मार्क हेनी जागरूकता पुरस्कार और सामुदायिक चैंपियन पुरस्कार के लिए अपना नामांकन प्रस्तुत करने का अंतिम दिन। \n\nकृपया अपना नामांकन प्रस्तुत करें यहाँ ।\n\nमार्क हेनी जागरूकता पुरस्कार। ऐसे चिकित्सा पेशेवर को नामांकित करें जो चिकित्सा पेशे में इस बीमारी के बारे में जागरूकता लाकर ईसीडी रोगियों के जीवन को बेहतर बनाने के लिए काम कर रहा हो। \nसामुदायिक चैंपियन पुरस्कार। किसी भी व्यक्ति (रोगी\, देखभालकर्ता\, चिकित्सा पेशेवर\, मित्र\, आदि) को नामांकित करें जिसने ईसीडी से प्रभावित सभी लोगों के जीवन को बेहतर बनाने में मदद करने के लिए अपना समय स्वेच्छा से दिया हो। \n\n\n\nमौखिक / पोस्टर प्रस्तुति सार\n1 फरवरी\, 2026- सारांश जमा करने की अंतिम तिथि। \n\n1 मई को होने वाली मेडिकल संगोष्ठी के लिए सारांश प्रस्तुतियाँ यहाँ स्वीकार की जा रही हैं। कृपया मौखिक और/या पोस्टर प्रस्तुति के लिए सारांश प्रस्तुत करें। यह आपके और आपके सहकर्मियों के काम को साझा करने का एक शानदार अवसर है। कृपया उन्हें इस अवसर के बारे में बताएँ। \n\nयात्रा छात्रवृत्ति\nयात्रा सहायता – ग्लेन पैडनिक मेमोरियल ट्रैवल फंड अब 2026 ईसीडीजीए सम्मेलन के लिए आवेदन स्वीकार कर रहा है। \nग्लेन पैडनिक ने दशकों तक एर्डहाइम-चेस्टर रोग (ईसीडी) से जूझते हुए एक पूर्ण और प्रभावशाली जीवन जिया। 2011 से 2022 तक\, उन्होंने ईसीडी ग्लोबल अलायंस के निदेशक मंडल में अटूट समर्पण के साथ काम किया और हमेशा यह सुनिश्चित किया कि हर निर्णय में मरीजों की आवाज़ और ज़रूरतें केंद्र में रहें। \nग्लेन की सेवा और करुणा की विरासत के सम्मान में\, उनके परिवार ने उदारतापूर्वक ग्लेन पैडनिक मेमोरियल ट्रैवल फंड की स्थापना की। यह फंड उन मरीज़ों\, देखभाल करने वालों और चिकित्सा पेशेवरों को वार्षिक ईसीडी सम्मेलन में भाग लेने में मदद करने के लिए वित्तीय सहायता प्रदान करता है जो आर्थिक तंगी के कारण इसमें भाग नहीं ले पाते। \n2026 ईसीडी सम्मेलन के लिए यात्रा सहायता हेतु आवेदन अब खुले हैं। धनराशि सीमित है\, और उन व्यक्तियों को प्राथमिकता दी जाएगी जिन्होंने पहले कभी इस कार्यक्रम में भाग नहीं लिया है। हमारा लक्ष्य उपलब्ध संसाधनों के साथ इस अवसर को अधिक से अधिक समुदाय के सदस्यों तक पहुँचाना है। \nआवेदन की अंतिम तिथि: 1 फ़रवरी\, 2026 पुरस्कार अधिसूचनाएँ: 1 मार्च\, 2026 से पहले \nयहां आवेदन करें: ग्लेन पैडनिक मेमोरियल यात्रा निधि अनुरोध। \nसम्मेलन के लिए होटल और यात्रा संबंधी जानकारी\nसम्मेलन होटल\nहिल्टन बर्मिंघम एट यूएबी\n 808 20वीं स्ट्रीट साउथ\n बर्मिंघम\, एएल 35205\n फ़ोन: +1 (659) 251-1934 \nसम्मेलन में भाग लेने वालों के लिए यूएबी स्थित हिल्टन बर्मिंघम होटल में कुछ कमरे आरक्षित किए गए हैं।\nसमूह दर का लाभ उठाने के लिए कमरे 6 अप्रैल\, 2026 तक आरक्षित किए जाने चाहिए। \nकमरा बुक करें \nयदि आपको अपना कमरा बुक करने में कोई समस्या आती है\, तो कृपया हिल्टन बर्मिंघम डाउनटाउन में साइमन हिल से संपर्क करें। उनका नंबर 205-910-1970 है और उनका ईमेल simon.hill@hiltoncom है। \nहवाई अड्डे का परिवहन\nबर्मिंघम-शटल्सवर्थ अंतर्राष्ट्रीय हवाई अड्डा (बीएचएम)\n बर्मिंघम हवाई अड्डे से होटल तक मानार्थ शटल सेवा उपलब्ध है और यह सेवा सीधे हिल्टन डाउनटाउन एट यूएबी द्वारा प्रदान की जाती है। \nशटल का उपयोग करने के लिए: \n\nअपना सामान ले लीजिए।\nशटल सेवा का अनुरोध करने के लिए होटल को 205-933-9000 पर कॉल करें।\nगेट नंबर 4L की ओर बढ़ें और “हिल्टन” लिखी बस का इंतजार करें।\n\nअटलांटा होते हुए यात्रा करना\nहार्ट्सफील्ड-जैक्सन अटलांटा अंतर्राष्ट्रीय हवाई अड्डा (एटीएल) बर्मिंघम से लगभग 3 घंटे की दूरी पर है और यहाँ से अधिकांश देशों के लिए सीधी अंतर्राष्ट्रीय उड़ानें उपलब्ध हैं। एटीएल के माध्यम से आने वाले यात्रियों के लिए अटलांटा हवाई अड्डे और बर्मिंघम के बीच शटल सेवा उपलब्ध है। \nशटल सेवा लिंक \nसंपर्क करना:\n एर्डहाइम-चेस्टर रोग वैश्विक गठबंधन\n ईमेल: support@erdheim-chester.org \nपंजीकरण करवाना \nहमारे प्रायोजक\n  URL:https://www.erdheim-chester.org/event/11%e0%a4%b5%e0%a5%80%e0%a4%82-%e0%a4%b5%e0%a4%be%e0%a4%b0%e0%a5%8d%e0%a4%b7%e0%a4%bf%e0%a4%95-%e0%a4%88%e0%a4%b8%e0%a5%80%e0%a4%a1%e0%a5%80-%e0%a4%9a%e0%a4%bf%e0%a4%95%e0%a4%bf%e0%a4%a4%e0%a5%8d/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, 35205\, United States CATEGORIES:ECD मेडिकल संगोष्ठी,प्रदर्शित ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Medical-Symposium-hd-v2.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260430 DTEND;VALUE=DATE:20260503 DTSTAMP:20260410T171932Z CREATED:20250924T153146Z LAST-MODIFIED:20260410T171932Z UID:10000877-1777507200-1777766399@www.erdheim-chester.org SUMMARY:הסימפוזיון הרפואי השנתי ה-11 בנושא ECD - ברמינגהם 2026 DESCRIPTION:הברית הגלובלית למחלת ארדהיים-צ’סטר מכריזה על סימפוזיון רפואי 2026 \nברמינגהם\, אלבמה – הברית הגלובלית למחלת ארדהיים-צ’סטר (ECDGA) ובית הספר לרפואה של אוניברסיטת אלבמה (UAB) מזמינים אנשי מקצוע בתחום הבריאות וחוקרים. \n\nסימפוזיון רפואי: 30 באפריל – 2 במאי\, 2026\n\nיום חמישי\, 30 באפריל 2026\nמפגש מטופלים ומשפחות: 8:00-16:30\nמיקום: מרכז הכנסים Marnix E. Heersink באוניברסיטת אלבמה בברמינגהם\nארוחת ערב חגיגית: 18:00-20:00\nמיקום: Hilton at UAB Downtown \nיום שישי\, 1 במאי 2026\nסימפוזיון רפואי: 8:00-17:00\nמיקום: מרכז הכנסים Marnix E. Heersink באוניברסיטת אלבמה בברמינגהם\nקבלת פנים רפואית לסימפוזיון: 18:00-20:00\nמיקום: מרכז הכנסים Marnix E. Heersink באוניברסיטת אלבמה בברמינגהם \nיום שבת\, 2 במאי 2026\nפגישת מרכז טיפול ECD: 8:00-11:00\nמיקום: מרכז הסרטן UAB \nאירוע זה יפגיש את קהילת מחלת ארדהיים-צ’סטר העולמית עם מומחים רפואיים מובילים כדי לשתף את המחקר העדכני ביותר\, תובנות קליניות ומשאבים קהילתיים. המשתתפים יכולים לצפות למפגשים חינוכיים\, הזדמנויות להתחבר עם עמיתים ועדכונים על טיפולים מתפתחים וטיפול בחולים. \nפרטים נוספים על המלון והאטרקציות המרכזיות בתוכנית יפורסמו בחודשים הקרובים. \nסֵדֶר הַיוֹם\n\n\n\n\n TimeSubjectPresenter\n\n\n\n\n 8:00 amRegistration & light breakfast\n\n\n 8:30 amWelcome to Birmingham and the 11th Annual Erdheim-Chester Disease International ConferenceGaurav Goyal\nUniversity of Alabama at Birmingham\, Birmingham\, AL USA\n\n\n Keynote Address\n\n\n 8:45 am Diversity and Degeneration in\nNeurohistiocytic DiseaseNicole Coufal\nUniversity of California\, San Diego\nUSA\n\n\n 9:25 amBreak\n\n\n Morning Abstract Presentations Session 1: Cells\, Clones & Circuits: Where Histiocytosis Begins (and Persists)\n\n\n 9:35 amARAF Mutations Drive Histiocytic Neoplasms\nIn Vivo and Provide Insights into Cellular\nOriginBenjamin Durham\nRutgers Cancer Institute\, Robert\nWood Johnson School of Medicine\,\nBrunswick\, NJ\n\n\n 9:50 amTracking BRAF V600E Persistence under MEK\nInhibition in Histiocytoses: a B-cell–enriched\nsignalJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 10:05 amDistribution of MAP2K1 Variants Across\nPeripheral Blood Cells in Erdheim-Chester\nDisease and Other HistiocytosesIrena Ungureanu\nAmbroise-Paré Hospital\, Pathology\nDepartment\, Boulogne-Billancourt\,\nFrance\n\n\n 10:20 amThe Clonal Origin and Evolution of High-Risk\nMultisystem Histiocytosis in AdultsMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n 10:35 amNetworking Break\n\n\n Morning Abstract Presentations Session 2: Genotype → Therapy: Biomarkers\, Responses\, and New Vulnerabilities\n\n\n 10:50 amKRAS Mutations in Histiocytic Neoplasms:\nMutation Spectrum and Response to MEK\nInhibitionDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:05 amCyclin D1 Overexpression Drives Replication\nStress and Creates Therapeutic\nVulnerabilities in Histiocytic NeoplasmsDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:20 amClonal Hematopoiesis Predicts Response to\nInterferon-α in Erdheim-Chester Disease and\nMyeloproliferative NeoplasmsJérôme Razanamahery\nDijon University Hospital\, France\n\n\n 11:35 amImpact of Additional Genetic Variants in the\nCourse of Erdheim-Chester Disease… a\nMulticentric Longitudinal Study of 445 French\nPatientsFélicien Triboulet\nPitié-Salpêtrière hospital\, Sorbonne\nUniversity\, Paris\, France\n\n\n 11:50 amGroup Photo\n\n\n 12:00 pmLunch\n\n\n Afternoon Abstract Presentations Session 3: Pixels to Patterns: ECD and Xanthogranuloma\n\n\n 1:00 pmCentral Nervous System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:15 pmMusculoskeletal System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:30 pmPatterns of Presentation and Outcomes in\nAdult XanthogranulomaGuneet Janda\nMayo Clinic\, Rochester\, MN USA\n\n\n 1:45 pmNetworking Break\n\n\n Afternoon Abstract Presentations Session 4: Care in the Real World: Treatment Patterns and Survivorship\n\n\n 2:00 pmReal World Frontline Systemic Anti-Cancer\nTreatment Patterns and Outcomes in\nErdheim–Chester DiseaseCarla Isabel Borre\nMayo Clinic\, Rochester\, MN USA\n\n\n 2:15 pmBurden of Chronic Health Conditions After\nDiagnosis of Erdheim–Chester Disease\n(ECD): Early Results from the Histiocytic\nDisorder Survivor StudyGaurav Goyal\nUniversity of Alabama at\nBirmingham\, Birmingham\, AL USA\n\n\n 2:30 pmDestombes-Rosai-Dorfman Disease:\nClinical\, Molecular Characteristics and\nTreatment Response: data from a\nretrospective cohort of 107 patientsJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 2:45 pmConsiderations for Assessment and\nTreatment of Neuropsychiatric Symptoms in\nECDAnneka Johnston\nRush University Medical Center\,\nChicago IL\n\n\n Poster Presentations and Networking\n\n\n 3:00 pmErdheim-Chester Disease (ECD) is a Rare\nHistiocytic Neoplasm of Non-Langerhans\nCell HistiocytosisAbdalla Bowirrat\nAriel University\, Israel\n\n\n Diagnostic challenges in mixed ErdheimChester Disease and Langerhans Cell\nHistiocytosis in a 54-year-old maleSameer Andani\nMofitt Cancer Center & University\nof South Florida\n\n\n A Mycosis Fungoides-like Drug Reaction\nRapidly Resolving Following Switch from\nBRAF Inhibitor to MEK Inhibitor Monotherapy\nin Erdheim-Chester DiseaseSaipriya Ayyar\nUniversity of Cincinnati/UC Health\,\nCincinnati OH\n\n\n Multimodality Imaging in Erdheim–Chester\nDisease: Radiologic Insights from Pediatric\nand Adult CasesPriyanka Naranje\nAll India Institute of Medical\nSciences\, New Delhi\, India\n\n\n Cardiovascular System Imaging\nAbnormalities in Erdheim-Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n BRAF-Positive Erdheim–Chester Disease with\nProgressive Pulmonary and Vascular\nInvolvement Successfully Treated with\nVemurafenib: A Case ReportHulya Yilmaz Tekinhatun\nDiyarbakir Gazi Yasargil Training and\nResearch Hospital\, Turkey\n\n\n Concurrent Erdheim-Chester Disease and\nClassical Hodgkin Lymphoma with\nunexpected response to lymphoma-directed\ntherapyRebecca Denson\nNew York Presbyterian-Weill Cornell\nMedicine\, New York\, NY\n\n\n Abdominal Imaging Abnormalities in\nErdheim-Chester Disease: A Systematic\nReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n Prevalence and distribution of ErdheimChester Disease in the UK estimated from\nreferral to a National Advisory PanelMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 3:45 pmAll that glitters: retro-orbital\nxanthogranuloma or ECD?Matthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 4:15 pmThe Clue Was the Blood Pressure: Atypical\nErdheim–Chester DiseaseJithma Abeykoon\nMayo Clinic\, Rochester\, MN USA\n\n\n Closing Remarks & Student Abstract Award\n\n\n 4:45 pmECD Global Alliance into the FutureJerome Henson\nExecutive Director\, ECD Global\nAlliance\, DeRidder\, LA USA\n\n\n 4:55 pmJunior Investigator – Best Student\nPresentation AwardOshrat Hershkovitz-Rokah\nAriel University & Assut\n\n\n\n\nהורדת סדר יום \nלִרְשׁוֹם \nהערה: הירשמו לפני ה-1 בפברואר כדי לנצל את עלות ההרשמה המוקדמת! חסכו 200 דולר והירשמו תמורת 300 דולר בלבד! \nפרס המודעות של מארק הייני ופרס אלוף הקהילה\n1 בפברואר\, 2026 – יום אחרון להגשת מועמדות לפרס המודעות על שם מארק הייני ולפרס אלוף הקהילה. \n\nאנא שלחו את מועמדותכם כאן .\n\nפרס המודעות ע”ש מארק הייני. הצעת הצעה לאיש מקצוע רפואי הפועל לשיפור חייהם של חולי ECD על ידי העלאת המודעות למחלה בקרב המקצוע הרפואי. \nפרס אלוף הקהילה. ניתן להמליץ ​​על כל אדם (מטופל\, מטפל\, איש מקצוע רפואי\, חבר וכו’) שהתנדב מזמנו כדי לסייע בשיפור חייהם של כל אלו שנפגעו מ-ECD. \n\n\n\nתקצירי מצגת בעל פה / פוסטר\n1 בפברואר 2026 – מועד אחרון להגשת תקצירים. \n\nהגשת תקצירים לסימפוזיון הרפואי ב-1 במאי מתקבלת כאן . אנא שלחו תקצירים להצגה בעל פה ו/או בפוסטר. זוהי הזדמנות מצוינת לשתף את עבודתכם ואת עבודתם של עמיתכם. אנא הודיעו להם על ההזדמנות. \n\nמלגות נסיעות\nסיוע בנסיעות – קרן הנסיעות ע”ש גלן פדניק מקבלת כעת בקשות לכנס ECDGA 2026. \nגלן פדניק חי חיים מלאים ומשפיעים תוך כדי התמודדות עם מחלת ארדהיים-צ’סטר (ECD) במשך עשרות שנים. בין השנים 2011 ל-2022\, הוא שירת במסירות בלתי מעורערת בדירקטוריון הברית הגלובלית של ECD\, ותמיד דאג שקולותיהם וצרכיהם של המטופלים יישארו מרכזיים בכל החלטה. \nלכבוד מורשת השירות והחמלה של גלן\, משפחתו הקימה בנדיבות את קרן הנסיעות לזכרו של גלן פדניק. קרן זו מספקת סיוע כספי כדי לסייע למטופלים\, מטפלים ואנשי מקצוע רפואיים להשתתף בכנס השנתי של ECD עבור אלו שלא היו יכולים להשתתף אחרת עקב אילוצים כלכליים. \nכעת פתוחות הגשת מועמדויות לסיוע בנסיעות לכנס ECD 2026. המימון מוגבל\, ותינתן עדיפות לאנשים שמעולם לא השתתפו באירוע קודם לכן. מטרתנו היא להפוך הזדמנות זו לזמינה לכמה שיותר חברי קהילה\, בהתבסס על המשאבים הזמינים. \nמועד אחרון להגשת מועמדות: 1 בפברואר 2026 הודעות על מענקים: לא יאוחר מ-1 במרץ 2026 \nהגש מועמדות כאן: בקשה לקרן נסיעות לזכרו של גלן פדניק. \nמידע על מלונות ונסיעות בכנסים\nמלון כנסים\nהילטון ברמינגהם ב-UAB\n רחוב 20 דרום 808\n ברמינגהאם\, אלבמה 35205\n טלפון: 1+(659) 251-1934 \nגוש חדרים הוזמן במלון הילטון ברמינגהם ב-UAB עבור משתתפי הכנס.\nיש להזמין חדרים עד ה-6 באפריל 2026\, כדי לקבל את תעריף הקבוצה. \nהזמנת חדר \nאם נתקלת בבעיות בהזמנת החדר שלך\, אנא צור קשר עם סיימון היל במלון הילטון ברמינגהאם דאונטאון. מספר הטלפון שלו הוא 205-910-1970 והדוא”ל שלו הוא simon.hill@hiltoncom. \nתחבורה משדה התעופה\nנמל התעופה הבינלאומי ברמינגהאם-שאטלסוורת’ (BHM)\n שירות הסעות חינם זמין משדה התעופה של ברמינגהאם למלון\, והוא מסופק ישירות על ידי מלון הילטון דאונטאון ב-UAB. \nכדי להשתמש בשאטל: \n\nאסוף את המזוודות שלך.\nהתקשרו למלון בטלפון 205-933-9000 כדי לבקש את שירות ההסעות.\nהמשך לדלת מספר 4L וחכה לאוטובוס המסומן “הילטון”.\n\nנסיעה דרך אטלנטה\nנמל התעופה הבינלאומי הרטספילד-ג’קסון אטלנטה (ATL) נמצא במרחק של כ-3 שעות נסיעה מבירמינגהם ומציע טיסות בינלאומיות ישירות לרוב המדינות. שירותי הסעות זמינים בין נמל התעופה של אטלנטה לברמינגהם לנוסעים המגיעים דרך נמל התעופה ATL. \nקישור לשירות הסעות \nמַגָע:\n הברית הגלובלית למחלת ארדהיים-צ’סטר\n דוא”ל: support@erdheim-chester.org \nלִרְשׁוֹם \nנותני החסות שלנו\n  URL:https://www.erdheim-chester.org/event/%d7%94%d7%a1%d7%99%d7%9e%d7%a4%d7%95%d7%96%d7%99%d7%95%d7%9f-%d7%94%d7%a8%d7%a4%d7%95%d7%90%d7%99-%d7%94%d7%a9%d7%a0%d7%aa%d7%99-%d7%94-11-%d7%91%d7%a0%d7%95%d7%a9%d7%90-ecd-%d7%91%d7%a8%d7%9e%d7%99/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, 35205\, United States CATEGORIES:מוּבלָט,סימפוזיון רפואי ECD ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Medical-Symposium-hd-v2.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260430 DTEND;VALUE=DATE:20260503 DTSTAMP:20260410T171933Z CREATED:20250924T153146Z LAST-MODIFIED:20260410T171933Z UID:10000878-1777507200-1777766399@www.erdheim-chester.org SUMMARY:11ο Ετήσιο Ιατρικό Συμπόσιο ECD - Birmingham 2026 DESCRIPTION:Η Παγκόσμια Συμμαχία για τη Νόσο Erdheim-Chester ανακοινώνει το Ιατρικό Συμπόσιο 2026 \nΜπέρμιγχαμ\, AL – Η Παγκόσμια Συμμαχία για τη Νόσο Erdheim-Chester (ECDGA) και η Ιατρική Σχολή του UAB προσκαλούν επαγγελματίες υγείας και ερευνητές. \n\nΙατρικό Συμπόσιο: 30 Απριλίου – 2 Μαΐου 2026\n\nΠέμπτη\, 30 Απριλίου 2026\nΣυνάντηση Ασθενών & Οικογενειών: 08:00-16:30\nΤοποθεσία: Marnix E. Heersink Conference Center στο Πανεπιστήμιο της Αλαμπάμα στο Μπέρμιγχαμ\nΕπίσημο Δείπνο: 18:00-20:00\nΤοποθεσία: Hilton at UAB Downtown \nΠαρασκευή\, 1 Μαΐου 2026\nΙατρικό Συμπόσιο: 08:00-17:00\nΤοποθεσία: Marnix E. Heersink Conference Center στο Πανεπιστήμιο της Αλαμπάμα στο Μπέρμιγχαμ\nΙατρική Δεξίωση Ιατρικού Συμποσίου: 18:00-20:00\nΤοποθεσία: Marnix E. Heersink Conference Center στο Πανεπιστήμιο της Αλαμπάμα στο Μπέρμιγχαμ \nΣάββατο\, 2 Μαΐου 2026\nΣυνάντηση Κέντρου Φροντίδας ECD: 08:00-11:00\nΤοποθεσία: UAB Cancer Center \nΑυτή η εκδήλωση θα φέρει σε επαφή την παγκόσμια κοινότητα της νόσου Erdheim-Chester με κορυφαίους ιατρικούς εμπειρογνώμονες για να μοιραστούν την τελευταία έρευνα\, τις κλινικές γνώσεις και τους πόρους της κοινότητας. Οι συμμετέχοντες μπορούν να περιμένουν εκπαιδευτικές συνεδρίες\, ευκαιρίες για να συνδεθούν με ομότιμους και ενημερώσεις σχετικά με τις αναδυόμενες θεραπείες και τη φροντίδα των ασθενών. \nΠερισσότερες λεπτομέρειες σχετικά με το ξενοδοχείο και τα κυριότερα σημεία του προγράμματος θα ανακοινωθούν τους επόμενους μήνες. \nΑτζέντα\n\n\n\n\n TimeSubjectPresenter\n\n\n\n\n 8:00 amRegistration & light breakfast\n\n\n 8:30 amWelcome to Birmingham and the 11th Annual Erdheim-Chester Disease International ConferenceGaurav Goyal\nUniversity of Alabama at Birmingham\, Birmingham\, AL USA\n\n\n Keynote Address\n\n\n 8:45 am Diversity and Degeneration in\nNeurohistiocytic DiseaseNicole Coufal\nUniversity of California\, San Diego\nUSA\n\n\n 9:25 amBreak\n\n\n Morning Abstract Presentations Session 1: Cells\, Clones & Circuits: Where Histiocytosis Begins (and Persists)\n\n\n 9:35 amARAF Mutations Drive Histiocytic Neoplasms\nIn Vivo and Provide Insights into Cellular\nOriginBenjamin Durham\nRutgers Cancer Institute\, Robert\nWood Johnson School of Medicine\,\nBrunswick\, NJ\n\n\n 9:50 amTracking BRAF V600E Persistence under MEK\nInhibition in Histiocytoses: a B-cell–enriched\nsignalJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 10:05 amDistribution of MAP2K1 Variants Across\nPeripheral Blood Cells in Erdheim-Chester\nDisease and Other HistiocytosesIrena Ungureanu\nAmbroise-Paré Hospital\, Pathology\nDepartment\, Boulogne-Billancourt\,\nFrance\n\n\n 10:20 amThe Clonal Origin and Evolution of High-Risk\nMultisystem Histiocytosis in AdultsMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n 10:35 amNetworking Break\n\n\n Morning Abstract Presentations Session 2: Genotype → Therapy: Biomarkers\, Responses\, and New Vulnerabilities\n\n\n 10:50 amKRAS Mutations in Histiocytic Neoplasms:\nMutation Spectrum and Response to MEK\nInhibitionDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:05 amCyclin D1 Overexpression Drives Replication\nStress and Creates Therapeutic\nVulnerabilities in Histiocytic NeoplasmsDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:20 amClonal Hematopoiesis Predicts Response to\nInterferon-α in Erdheim-Chester Disease and\nMyeloproliferative NeoplasmsJérôme Razanamahery\nDijon University Hospital\, France\n\n\n 11:35 amImpact of Additional Genetic Variants in the\nCourse of Erdheim-Chester Disease… a\nMulticentric Longitudinal Study of 445 French\nPatientsFélicien Triboulet\nPitié-Salpêtrière hospital\, Sorbonne\nUniversity\, Paris\, France\n\n\n 11:50 amGroup Photo\n\n\n 12:00 pmLunch\n\n\n Afternoon Abstract Presentations Session 3: Pixels to Patterns: ECD and Xanthogranuloma\n\n\n 1:00 pmCentral Nervous System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:15 pmMusculoskeletal System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:30 pmPatterns of Presentation and Outcomes in\nAdult XanthogranulomaGuneet Janda\nMayo Clinic\, Rochester\, MN USA\n\n\n 1:45 pmNetworking Break\n\n\n Afternoon Abstract Presentations Session 4: Care in the Real World: Treatment Patterns and Survivorship\n\n\n 2:00 pmReal World Frontline Systemic Anti-Cancer\nTreatment Patterns and Outcomes in\nErdheim–Chester DiseaseCarla Isabel Borre\nMayo Clinic\, Rochester\, MN USA\n\n\n 2:15 pmBurden of Chronic Health Conditions After\nDiagnosis of Erdheim–Chester Disease\n(ECD): Early Results from the Histiocytic\nDisorder Survivor StudyGaurav Goyal\nUniversity of Alabama at\nBirmingham\, Birmingham\, AL USA\n\n\n 2:30 pmDestombes-Rosai-Dorfman Disease:\nClinical\, Molecular Characteristics and\nTreatment Response: data from a\nretrospective cohort of 107 patientsJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 2:45 pmConsiderations for Assessment and\nTreatment of Neuropsychiatric Symptoms in\nECDAnneka Johnston\nRush University Medical Center\,\nChicago IL\n\n\n Poster Presentations and Networking\n\n\n 3:00 pmErdheim-Chester Disease (ECD) is a Rare\nHistiocytic Neoplasm of Non-Langerhans\nCell HistiocytosisAbdalla Bowirrat\nAriel University\, Israel\n\n\n Diagnostic challenges in mixed ErdheimChester Disease and Langerhans Cell\nHistiocytosis in a 54-year-old maleSameer Andani\nMofitt Cancer Center & University\nof South Florida\n\n\n A Mycosis Fungoides-like Drug Reaction\nRapidly Resolving Following Switch from\nBRAF Inhibitor to MEK Inhibitor Monotherapy\nin Erdheim-Chester DiseaseSaipriya Ayyar\nUniversity of Cincinnati/UC Health\,\nCincinnati OH\n\n\n Multimodality Imaging in Erdheim–Chester\nDisease: Radiologic Insights from Pediatric\nand Adult CasesPriyanka Naranje\nAll India Institute of Medical\nSciences\, New Delhi\, India\n\n\n Cardiovascular System Imaging\nAbnormalities in Erdheim-Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n BRAF-Positive Erdheim–Chester Disease with\nProgressive Pulmonary and Vascular\nInvolvement Successfully Treated with\nVemurafenib: A Case ReportHulya Yilmaz Tekinhatun\nDiyarbakir Gazi Yasargil Training and\nResearch Hospital\, Turkey\n\n\n Concurrent Erdheim-Chester Disease and\nClassical Hodgkin Lymphoma with\nunexpected response to lymphoma-directed\ntherapyRebecca Denson\nNew York Presbyterian-Weill Cornell\nMedicine\, New York\, NY\n\n\n Abdominal Imaging Abnormalities in\nErdheim-Chester Disease: A Systematic\nReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n Prevalence and distribution of ErdheimChester Disease in the UK estimated from\nreferral to a National Advisory PanelMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 3:45 pmAll that glitters: retro-orbital\nxanthogranuloma or ECD?Matthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 4:15 pmThe Clue Was the Blood Pressure: Atypical\nErdheim–Chester DiseaseJithma Abeykoon\nMayo Clinic\, Rochester\, MN USA\n\n\n Closing Remarks & Student Abstract Award\n\n\n 4:45 pmECD Global Alliance into the FutureJerome Henson\nExecutive Director\, ECD Global\nAlliance\, DeRidder\, LA USA\n\n\n 4:55 pmJunior Investigator – Best Student\nPresentation AwardOshrat Hershkovitz-Rokah\nAriel University & Assut\n\n\n\n\nΛήψη Προγράμματος \nΕγγραφή \nΣΗΜΕΙΩΣΗ: Εγγραφείτε πριν από την 1η Φεβρουαρίου για να επωφεληθείτε από το κόστος εγγραφής early bird! Εξοικονομήστε $200 USD και εγγραφείτε μόνο με $300 USD! \nΒραβείο Ευαισθητοποίησης Mark Heaney & Βραβείο Κοινοτικού Πρωταθλητή\n1 Φεβρουαρίου 2026 – Τελευταία ημέρα υποβολής υποψηφιοτήτων για το Βραβείο Ευαισθητοποίησης Mark Heaney και το Βραβείο Κοινοτικού Πρωταθλητή . \n\nΥποβάλετε τις υποψηφιότητές σας εδώ.\n\nΒραβείο ευαισθητοποίησης Mark Heaney. Υποδείξτε έναν επαγγελματία ιατρό που εργάζεται για τη βελτίωση της ζωής των ασθενών με ECD\, ευαισθητοποιώντας το ιατρικό επάγγελμα για την ασθένεια. \nΒραβείο Κοινοτικού Πρωταθλητή. Υποδείξτε οποιονδήποτε (ασθενή\, φροντιστή\, επαγγελματία υγείας\, φίλο κ.λπ.) που έχει αφιερώσει εθελοντικά το χρόνο του για να βοηθήσει στη βελτίωση της ζωής όλων όσων επηρεάζονται από το ECD. \n\n\n\nΠεριλήψεις προφορικών / αναρτημένων παρουσιάσεων\n1 Φεβρουαρίου 2026- Περιλήψεις που πρέπει να υποβληθούν. \n\nΥποβολές περιλήψεων για το Ιατρικό Συμπόσιο την 1η Μαΐου\, γίνονται δεκτές εδώ Παρακαλούμε να υποβάλετε περιλήψεις για προφορική ή/και αναρτημένη παρουσίαση. Πρόκειται για μια εξαιρετική ευκαιρία να μοιραστείτε το έργο σας και το έργο των συναδέλφων σας. Παρακαλούμε ενημερώστε τους για την ευκαιρία αυτή. \n\nΤαξιδιωτικές υποτροφίες\nΤαξιδιωτική βοήθεια – Το Ταμείο Ταξιδιωτικής Βοήθειας του Glenn Padnick Τώρα γίνονται δεκτές αιτήσεις για το συνέδριο της ECDGA 2026. \nΟ Glenn Padnick έζησε μια γεμάτη και σημαντική ζωή\, ενώ αντιμετώπιζε τη νόσο Erdheim-Chester (ECD) για δεκαετίες. Από το 2011 έως το 2022\, υπηρέτησε με ακλόνητη αφοσίωση στο Διοικητικό Συμβούλιο της Παγκόσμιας Συμμαχίας ECD\, διασφαλίζοντας πάντα ότι οι φωνές και οι ανάγκες των ασθενών παρέμεναν στο επίκεντρο κάθε απόφασης. \nΠρος τιμήν της κληρονομιάς του Glenn στην υπηρεσία και τη συμπόνια\, η οικογένειά του δημιούργησε γενναιόδωρα το Ταμείο Ταξιδιών Μνήμης Glenn Padnick. Αυτό το ταμείο παρέχει οικονομική βοήθεια για να βοηθήσει ασθενείς\, φροντιστές και επαγγελματίες του ιατρικού κλάδου να συμμετάσχουν στο ετήσιο συνέδριο ECD για όσους δεν θα μπορούσαν διαφορετικά να συμμετάσχουν λόγω οικονομικών περιορισμών. \nΟι αιτήσεις για ταξιδιωτική βοήθεια για το Συνέδριο ECD 2026 είναι πλέον ανοικτές. Η χρηματοδότηση είναι περιορισμένη και προτεραιότητα θα δοθεί σε άτομα που δεν έχουν συμμετάσχει ποτέ στο παρελθόν στην εκδήλωση. Στόχος μας είναι να καταστήσουμε αυτή την ευκαιρία διαθέσιμη σε όσο το δυνατόν περισσότερα μέλη της κοινότητας με τους διαθέσιμους πόρους. \nΠροθεσμία υποβολής αιτήσεων: Ειδοποιήσεις για την απονομή: Το αργότερο την 1η Μαρτίου 2026 \nΚάντε αίτηση εδώ: Glenn Padnick Memorial Travel Fund Request. \nΞενοδοχείο και πληροφορίες ταξιδιού για το συνέδριο\nΞενοδοχείο συνεδρίων\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nΤηλ: +1 (659) 251-1934 \nΈνα μπλοκ δωματίων έχει δεσμευτεί στο Hilton Birmingham at UAB για τους συμμετέχοντες στο συνέδριο.\nΤα δωμάτια πρέπει να έχουν κρατηθεί έως τις 6 Απριλίου 2026 για να λάβετε την ομαδική τιμή. \nΚράτηση δωματίου \nΕάν αντιμετωπίζετε προβλήματα με την κράτηση του δωματίου σας\, παρακαλούμε επικοινωνήστε με τον Simon Hill στο Hilton Birmingham Downtown. Ο αριθμός του είναι 205-910-1970 και το email του είναι simon.hill@hiltoncom. \nΜεταφορά αεροδρομίου\nΔιεθνές Αεροδρόμιο Birmingham-Shuttlesworth (BHM)\nΗ δωρεάν υπηρεσία μεταφοράς από το αεροδρόμιο του Μπέρμιγχαμ προς το ξενοδοχείο παρέχεται απευθείας από το Hilton Downtown at UAB. \nΓια να χρησιμοποιήσετε το λεωφορείο: \n\nΠαραλάβετε τις αποσκευές σας.\nΚαλέστε το ξενοδοχείο στο 205-933-9000 για να ζητήσετε το λεωφορείο.\nΠροχωρήστε στην πόρτα #4L και περιμένετε το λεωφορείο με την ένδειξη “Hilton”.\n\nΤαξιδεύοντας μέσω Ατλάντα\nΤο Διεθνές Αεροδρόμιο Hartsfield-Jackson της Ατλάντα (ATL) απέχει περίπου 3 ώρες από το Μπέρμιγχαμ και προσφέρει απευθείας διεθνείς πτήσεις προς τις περισσότερες χώρες. Για τους ταξιδιώτες που φτάνουν μέσω του ATL\, διατίθενται υπηρεσίες μεταφοράς με λεωφορείο μεταξύ του αεροδρομίου της Ατλάντα και του Μπέρμιγχαμ. \nΣύνδεσμος Υπηρεσίας Μεταφοράς \nΕπικοινωνία:\nErdheim-Chester Disease Global Alliance\n Email: support@erdheim-chester.org \nΕγγραφή \nΟι Χορηγοί μας\n  URL:https://www.erdheim-chester.org/event/11%ce%bf-%ce%b5%cf%84%ce%ae%cf%83%ce%b9%ce%bf-%ce%b9%ce%b1%cf%84%cf%81%ce%b9%ce%ba%cf%8c-%cf%83%cf%85%ce%bc%cf%80%cf%8c%cf%83%ce%b9%ce%bf-ecd-birmingham-2026/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, 35205\, United States CATEGORIES:ECD Ιατρικό Συμπόσιο,Προτεινόμενο ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Medical-Symposium-hd-v2.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260430 DTEND;VALUE=DATE:20260503 DTSTAMP:20260410T171628Z CREATED:20250924T153146Z LAST-MODIFIED:20260410T171628Z UID:10000871-1777507200-1777766399@www.erdheim-chester.org SUMMARY:11th Annual ECD Medical Symposium - Birmingham 2026 DESCRIPTION:Erdheim-Chester Disease Global Alliance Announces 2026 Medical Symposium \nBirmingham\, AL — The Erdheim-Chester Disease Global Alliance (ECDGA) and UAB School of Medicine invites healthcare professionals and researchers. \n\nMedical Symposium: April 30–May 2\, 2026\n\nThursday\, April 30\, 2026\nPatient & Family Gathering: 8:00am-4:30pm\nLocation: Marnix E. Heersink Conference Center at University of Alabama at Birmingham\nCelebration Dinner: 6:00pm-8:00pm\nLocation: Hilton at UAB Downtown \nFriday\, May 1\, 2026\nMedical Symposium: 8:00am-5:00pm\nLocation: Marnix E. Heersink Conference Center at University of Alabama at Birmingham\nMedical Symposium Medical Reception: 6:00pm-8:00pm\nLocation: Marnix E. Heersink Conference Center at University of Alabama at Birmingham \nSaturday\, May 2\, 2026\nECD Care Center Meeting: 8:00am-11:00am\nLocation: UAB Cancer Center \nThis event will bring together the global Erdheim-Chester disease community with leading medical experts to share the latest research\, clinical insights\, and community resources. Attendees can expect educational sessions\, opportunities to connect with peers\, and updates on emerging treatments and patient care. \nFurther details on the hotel and program highlights will be released in the coming months. \nAgenda\n\n\n\n\n TimeSubjectPresenter\n\n\n\n\n 8:00 amRegistration & light breakfast\n\n\n 8:30 amWelcome to Birmingham and the 11th Annual Erdheim-Chester Disease International ConferenceGaurav Goyal\nUniversity of Alabama at Birmingham\, Birmingham\, AL USA\n\n\n Keynote Address\n\n\n 8:45 am Diversity and Degeneration in\nNeurohistiocytic DiseaseNicole Coufal\nUniversity of California\, San Diego\nUSA\n\n\n 9:25 amBreak\n\n\n Morning Abstract Presentations Session 1: Cells\, Clones & Circuits: Where Histiocytosis Begins (and Persists)\n\n\n 9:35 amARAF Mutations Drive Histiocytic Neoplasms\nIn Vivo and Provide Insights into Cellular\nOriginBenjamin Durham\nRutgers Cancer Institute\, Robert\nWood Johnson School of Medicine\,\nBrunswick\, NJ\n\n\n 9:50 amTracking BRAF V600E Persistence under MEK\nInhibition in Histiocytoses: a B-cell–enriched\nsignalJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 10:05 amDistribution of MAP2K1 Variants Across\nPeripheral Blood Cells in Erdheim-Chester\nDisease and Other HistiocytosesIrena Ungureanu\nAmbroise-Paré Hospital\, Pathology\nDepartment\, Boulogne-Billancourt\,\nFrance\n\n\n 10:20 amThe Clonal Origin and Evolution of High-Risk\nMultisystem Histiocytosis in AdultsMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n 10:35 amNetworking Break\n\n\n Morning Abstract Presentations Session 2: Genotype → Therapy: Biomarkers\, Responses\, and New Vulnerabilities\n\n\n 10:50 amKRAS Mutations in Histiocytic Neoplasms:\nMutation Spectrum and Response to MEK\nInhibitionDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:05 amCyclin D1 Overexpression Drives Replication\nStress and Creates Therapeutic\nVulnerabilities in Histiocytic NeoplasmsDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:20 amClonal Hematopoiesis Predicts Response to\nInterferon-α in Erdheim-Chester Disease and\nMyeloproliferative NeoplasmsJérôme Razanamahery\nDijon University Hospital\, France\n\n\n 11:35 amImpact of Additional Genetic Variants in the\nCourse of Erdheim-Chester Disease… a\nMulticentric Longitudinal Study of 445 French\nPatientsFélicien Triboulet\nPitié-Salpêtrière hospital\, Sorbonne\nUniversity\, Paris\, France\n\n\n 11:50 amGroup Photo\n\n\n 12:00 pmLunch\n\n\n Afternoon Abstract Presentations Session 3: Pixels to Patterns: ECD and Xanthogranuloma\n\n\n 1:00 pmCentral Nervous System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:15 pmMusculoskeletal System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:30 pmPatterns of Presentation and Outcomes in\nAdult XanthogranulomaGuneet Janda\nMayo Clinic\, Rochester\, MN USA\n\n\n 1:45 pmNetworking Break\n\n\n Afternoon Abstract Presentations Session 4: Care in the Real World: Treatment Patterns and Survivorship\n\n\n 2:00 pmReal World Frontline Systemic Anti-Cancer\nTreatment Patterns and Outcomes in\nErdheim–Chester DiseaseCarla Isabel Borre\nMayo Clinic\, Rochester\, MN USA\n\n\n 2:15 pmBurden of Chronic Health Conditions After\nDiagnosis of Erdheim–Chester Disease\n(ECD): Early Results from the Histiocytic\nDisorder Survivor StudyGaurav Goyal\nUniversity of Alabama at\nBirmingham\, Birmingham\, AL USA\n\n\n 2:30 pmDestombes-Rosai-Dorfman Disease:\nClinical\, Molecular Characteristics and\nTreatment Response: data from a\nretrospective cohort of 107 patientsJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 2:45 pmConsiderations for Assessment and\nTreatment of Neuropsychiatric Symptoms in\nECDAnneka Johnston\nRush University Medical Center\,\nChicago IL\n\n\n Poster Presentations and Networking\n\n\n 3:00 pmErdheim-Chester Disease (ECD) is a Rare\nHistiocytic Neoplasm of Non-Langerhans\nCell HistiocytosisAbdalla Bowirrat\nAriel University\, Israel\n\n\n Diagnostic challenges in mixed ErdheimChester Disease and Langerhans Cell\nHistiocytosis in a 54-year-old maleSameer Andani\nMofitt Cancer Center & University\nof South Florida\n\n\n A Mycosis Fungoides-like Drug Reaction\nRapidly Resolving Following Switch from\nBRAF Inhibitor to MEK Inhibitor Monotherapy\nin Erdheim-Chester DiseaseSaipriya Ayyar\nUniversity of Cincinnati/UC Health\,\nCincinnati OH\n\n\n Multimodality Imaging in Erdheim–Chester\nDisease: Radiologic Insights from Pediatric\nand Adult CasesPriyanka Naranje\nAll India Institute of Medical\nSciences\, New Delhi\, India\n\n\n Cardiovascular System Imaging\nAbnormalities in Erdheim-Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n BRAF-Positive Erdheim–Chester Disease with\nProgressive Pulmonary and Vascular\nInvolvement Successfully Treated with\nVemurafenib: A Case ReportHulya Yilmaz Tekinhatun\nDiyarbakir Gazi Yasargil Training and\nResearch Hospital\, Turkey\n\n\n Concurrent Erdheim-Chester Disease and\nClassical Hodgkin Lymphoma with\nunexpected response to lymphoma-directed\ntherapyRebecca Denson\nNew York Presbyterian-Weill Cornell\nMedicine\, New York\, NY\n\n\n Abdominal Imaging Abnormalities in\nErdheim-Chester Disease: A Systematic\nReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n Prevalence and distribution of ErdheimChester Disease in the UK estimated from\nreferral to a National Advisory PanelMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 3:45 pmAll that glitters: retro-orbital\nxanthogranuloma or ECD?Matthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 4:15 pmThe Clue Was the Blood Pressure: Atypical\nErdheim–Chester DiseaseJithma Abeykoon\nMayo Clinic\, Rochester\, MN USA\n\n\n Closing Remarks & Student Abstract Award\n\n\n 4:45 pmECD Global Alliance into the FutureJerome Henson\nExecutive Director\, ECD Global\nAlliance\, DeRidder\, LA USA\n\n\n 4:55 pmJunior Investigator – Best Student\nPresentation AwardOshrat Hershkovitz-Rokah\nAriel University & Assut\n\n\n\n\nDownload Agenda \nRegister \nNOTE: Register before February 1st to take advantage of the early bird registration cost! Save $200 USD and register for only $300 USD! \nMark Heaney Awareness Award & Community Champion Award\nFebruary 1st\, 2026 – Last day to submit your nomination for the Mark Heaney Awareness Award & Community Champion Award . \n\nPlease submit your nominations here.\n\nMark Heaney Awareness Award.  Nominate a medical professional who is working to improve the lives of ECD patients by bringing awareness to the disease within the medical profession.\nCommunity Champion Award.  Nominate anyone (patient\, caregiver\, medical professional\, friend\, etc.) who has volunteered their time to help improve the lives of all of those impacted by ECD.\n\n\n\nOral / Poster Presentation Abstracts\nFebruary 1\, 2026- Abstracts Due. \n\nAbstract submissions for the Medical Symposium on 1 May\, are accepted here  Please submit abstracts for oral and/or poster presentation.  This is a great opportunity to share your work and the work of your colleagues.  Please let them know of the opportunity.\n\nTravel Scholarships\nTravel Assistance – The Glenn Padnick Memorial Travel Fund Now accepting applications for the 2026 ECDGA Conference. \nGlenn Padnick lived a full and impactful life while navigating Erdheim-Chester Disease (ECD) for decades. From 2011 to 2022\, he served with unwavering dedication on the ECD Global Alliance Board of Directors\, always ensuring that the voices and needs of patients remained central to every decision. \nIn honor of Glenn’s legacy of service and compassion\, his family generously established the Glenn Padnick Memorial Travel Fund. This fund provides financial assistance to help patients\, caregivers\, and medical professionals attend the annual ECD conference for those who may not otherwise be able to participate due to financial constraints. \nApplications are now open for travel assistance for the 2026 ECD Conference. Funding is limited\, and priority will be given to individuals who have never attended the event before. Our goal is to make this opportunity available to as many community members as possible with the resources available. \nApplication Deadline: February 1\, 2026 Award Notifications: No later than March 1\, 2026 \nApply Here: Glenn Padnick Memorial Travel Fund Request. \nConference Hotel & Travel Information\nConference Hotel\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nPhone: +1 (659) 251-1934 \nA block of rooms has been reserved at the Hilton Birmingham at UAB for conference attendees.\nRooms must be reserved by April 6\, 2026\, to receive the group rate. \nBook a Room \nIf you have any issues with booking your room\, please contact  Simon Hill at the Hilton Birmingham Downtown.  His number is 205-910-1970 and his email is simon.hill@hiltoncom. \nAirport Transportation\nBirmingham–Shuttlesworth International Airport (BHM)\nComplimentary shuttle service is available from the Birmingham airport to the hotel and is provided directly by the Hilton Downtown at UAB. \nTo use the shuttle:  \n\nCollect your luggage.\nCall the hotel at 205-933-9000 to request the shuttle.\nProceed to Door #4L and wait for the bus marked “Hilton.”\n\nTraveling via Atlanta\nHartsfield–Jackson Atlanta International Airport (ATL) is approximately 3 hours from Birmingham and offers direct international flights to most countries. Shuttle services are available between the Atlanta airport and Birmingham for travelers arriving through ATL. \nShuttle Service Link \nContact:\nErdheim-Chester Disease Global Alliance\nEmail: support@erdheim-chester.org \nRegister \nOur Sponsors\n  URL:https://www.erdheim-chester.org/event/11th-annual-ecd-medical-symposium-birmingham-2026/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, 35205\, United States CATEGORIES:ECD Medical Symposium,Featured ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Medical-Symposium-hd-v2.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260430 DTEND;VALUE=DATE:20260503 DTSTAMP:20260410T171935Z CREATED:20250924T153146Z LAST-MODIFIED:20260410T171935Z UID:10000879-1777507200-1777766399@www.erdheim-chester.org SUMMARY:11. jährliches ECD Medizinisches Symposium - Birmingham 2026 DESCRIPTION:Erdheim-Chester Disease Global Alliance kündigt medizinisches Symposium 2026 an \nBirmingham\, AL – Die Erdheim-Chester Disease Global Alliance (ECDGA) und die UAB School of Medicine laden Fachleute aus dem Gesundheitswesen und Forscher ein. \n\nMedizinisches Symposium: April 30-Mai 2\, 2026\n\nDonnerstag\, 30. April 2026\nPatienten- & Familientreffen: 8:00 Uhr – 16:30 Uhr\nOrt: Marnix E. Heersink Conference Center an der University of Alabama at Birmingham\nFestliches Abendessen: 18:00 Uhr – 20:00 Uhr\nOrt: Hilton at UAB Downtown \nFreitag\, 1. Mai 2026\nMedizinisches Symposium: 8:00 Uhr – 17:00 Uhr\nOrt: Marnix E. Heersink Conference Center an der University of Alabama at Birmingham\nMedizinischer Empfang des Symposiums: 18:00 Uhr – 20:00 Uhr\nOrt: Marnix E. Heersink Conference Center an der University of Alabama at Birmingham \nSamstag\, 2. Mai 2026\nECD Care Center Meeting: 8:00 Uhr – 11:00 Uhr\nOrt: UAB Cancer Center \nDiese Veranstaltung wird die weltweite Erdheim-Chester-Gemeinschaft mit führenden medizinischen Experten zusammenbringen\, um die neuesten Forschungsergebnisse\, klinischen Erkenntnisse und Ressourcen der Gemeinschaft zu teilen. Die Teilnehmer können sich auf Fortbildungsveranstaltungen\, Gelegenheiten zum Austausch mit Gleichgesinnten und Neuigkeiten zu neuen Behandlungsmethoden und zur Patientenversorgung freuen. \nWeitere Details zum Hotel und zu den Programmhighlights werden in den kommenden Monaten bekannt gegeben. \nTagesordnung\n\n\n\n\n TimeSubjectPresenter\n\n\n\n\n 8:00 amRegistration & light breakfast\n\n\n 8:30 amWelcome to Birmingham and the 11th Annual Erdheim-Chester Disease International ConferenceGaurav Goyal\nUniversity of Alabama at Birmingham\, Birmingham\, AL USA\n\n\n Keynote Address\n\n\n 8:45 am Diversity and Degeneration in\nNeurohistiocytic DiseaseNicole Coufal\nUniversity of California\, San Diego\nUSA\n\n\n 9:25 amBreak\n\n\n Morning Abstract Presentations Session 1: Cells\, Clones & Circuits: Where Histiocytosis Begins (and Persists)\n\n\n 9:35 amARAF Mutations Drive Histiocytic Neoplasms\nIn Vivo and Provide Insights into Cellular\nOriginBenjamin Durham\nRutgers Cancer Institute\, Robert\nWood Johnson School of Medicine\,\nBrunswick\, NJ\n\n\n 9:50 amTracking BRAF V600E Persistence under MEK\nInhibition in Histiocytoses: a B-cell–enriched\nsignalJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 10:05 amDistribution of MAP2K1 Variants Across\nPeripheral Blood Cells in Erdheim-Chester\nDisease and Other HistiocytosesIrena Ungureanu\nAmbroise-Paré Hospital\, Pathology\nDepartment\, Boulogne-Billancourt\,\nFrance\n\n\n 10:20 amThe Clonal Origin and Evolution of High-Risk\nMultisystem Histiocytosis in AdultsMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n 10:35 amNetworking Break\n\n\n Morning Abstract Presentations Session 2: Genotype → Therapy: Biomarkers\, Responses\, and New Vulnerabilities\n\n\n 10:50 amKRAS Mutations in Histiocytic Neoplasms:\nMutation Spectrum and Response to MEK\nInhibitionDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:05 amCyclin D1 Overexpression Drives Replication\nStress and Creates Therapeutic\nVulnerabilities in Histiocytic NeoplasmsDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:20 amClonal Hematopoiesis Predicts Response to\nInterferon-α in Erdheim-Chester Disease and\nMyeloproliferative NeoplasmsJérôme Razanamahery\nDijon University Hospital\, France\n\n\n 11:35 amImpact of Additional Genetic Variants in the\nCourse of Erdheim-Chester Disease… a\nMulticentric Longitudinal Study of 445 French\nPatientsFélicien Triboulet\nPitié-Salpêtrière hospital\, Sorbonne\nUniversity\, Paris\, France\n\n\n 11:50 amGroup Photo\n\n\n 12:00 pmLunch\n\n\n Afternoon Abstract Presentations Session 3: Pixels to Patterns: ECD and Xanthogranuloma\n\n\n 1:00 pmCentral Nervous System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:15 pmMusculoskeletal System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:30 pmPatterns of Presentation and Outcomes in\nAdult XanthogranulomaGuneet Janda\nMayo Clinic\, Rochester\, MN USA\n\n\n 1:45 pmNetworking Break\n\n\n Afternoon Abstract Presentations Session 4: Care in the Real World: Treatment Patterns and Survivorship\n\n\n 2:00 pmReal World Frontline Systemic Anti-Cancer\nTreatment Patterns and Outcomes in\nErdheim–Chester DiseaseCarla Isabel Borre\nMayo Clinic\, Rochester\, MN USA\n\n\n 2:15 pmBurden of Chronic Health Conditions After\nDiagnosis of Erdheim–Chester Disease\n(ECD): Early Results from the Histiocytic\nDisorder Survivor StudyGaurav Goyal\nUniversity of Alabama at\nBirmingham\, Birmingham\, AL USA\n\n\n 2:30 pmDestombes-Rosai-Dorfman Disease:\nClinical\, Molecular Characteristics and\nTreatment Response: data from a\nretrospective cohort of 107 patientsJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 2:45 pmConsiderations for Assessment and\nTreatment of Neuropsychiatric Symptoms in\nECDAnneka Johnston\nRush University Medical Center\,\nChicago IL\n\n\n Poster Presentations and Networking\n\n\n 3:00 pmErdheim-Chester Disease (ECD) is a Rare\nHistiocytic Neoplasm of Non-Langerhans\nCell HistiocytosisAbdalla Bowirrat\nAriel University\, Israel\n\n\n Diagnostic challenges in mixed ErdheimChester Disease and Langerhans Cell\nHistiocytosis in a 54-year-old maleSameer Andani\nMofitt Cancer Center & University\nof South Florida\n\n\n A Mycosis Fungoides-like Drug Reaction\nRapidly Resolving Following Switch from\nBRAF Inhibitor to MEK Inhibitor Monotherapy\nin Erdheim-Chester DiseaseSaipriya Ayyar\nUniversity of Cincinnati/UC Health\,\nCincinnati OH\n\n\n Multimodality Imaging in Erdheim–Chester\nDisease: Radiologic Insights from Pediatric\nand Adult CasesPriyanka Naranje\nAll India Institute of Medical\nSciences\, New Delhi\, India\n\n\n Cardiovascular System Imaging\nAbnormalities in Erdheim-Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n BRAF-Positive Erdheim–Chester Disease with\nProgressive Pulmonary and Vascular\nInvolvement Successfully Treated with\nVemurafenib: A Case ReportHulya Yilmaz Tekinhatun\nDiyarbakir Gazi Yasargil Training and\nResearch Hospital\, Turkey\n\n\n Concurrent Erdheim-Chester Disease and\nClassical Hodgkin Lymphoma with\nunexpected response to lymphoma-directed\ntherapyRebecca Denson\nNew York Presbyterian-Weill Cornell\nMedicine\, New York\, NY\n\n\n Abdominal Imaging Abnormalities in\nErdheim-Chester Disease: A Systematic\nReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n Prevalence and distribution of ErdheimChester Disease in the UK estimated from\nreferral to a National Advisory PanelMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 3:45 pmAll that glitters: retro-orbital\nxanthogranuloma or ECD?Matthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 4:15 pmThe Clue Was the Blood Pressure: Atypical\nErdheim–Chester DiseaseJithma Abeykoon\nMayo Clinic\, Rochester\, MN USA\n\n\n Closing Remarks & Student Abstract Award\n\n\n 4:45 pmECD Global Alliance into the FutureJerome Henson\nExecutive Director\, ECD Global\nAlliance\, DeRidder\, LA USA\n\n\n 4:55 pmJunior Investigator – Best Student\nPresentation AwardOshrat Hershkovitz-Rokah\nAriel University & Assut\n\n\n\n\nAgenda herunterladen \nRegistrieren Sie sich \nHINWEIS: Melden Sie sich vor dem 1. Februar an\, um von den Frühbucherpreisen zu profitieren! Sparen Sie $200 USD und registrieren Sie sich für nur $300 USD! \nMark Heaney Awareness Award & Community Champion Award\n1. Februar 2026 – Letzter Tag\, um Ihre Nominierung für den Mark Heaney Awareness Award & Community Champion Award einzureichen. \n\nBitte reichen Sie Ihre Nominierungen ein hier.\n\nMark Heaney Preis für das Bewusstsein. Nominieren Sie eine medizinische Fachkraft\, die sich dafür einsetzt\, das Leben von ECD-Patienten zu verbessern\, indem sie das Bewusstsein für die Krankheit innerhalb der Ärzteschaft schärft. \nCommunity Champion Award. Nominieren Sie eine Person (Patient\, Betreuer\, medizinisches Fachpersonal\, Freund usw.)\, die sich ehrenamtlich für die Verbesserung des Lebens aller von ECD Betroffenen eingesetzt hat. \n\n\n\nMündliche / Poster Präsentation Abstracts\n1. Februar 2026 – Fälligkeit der Abstracts. \n\nHier können Sie Abstracts für das Medizinische Symposium am 1. Mai einreichen. Bitte reichen Sie Abstracts für eine mündliche und/oder Posterpräsentation ein. Dies ist eine großartige Gelegenheit\, Ihre Arbeit und die Arbeit Ihrer Kollegen vorzustellen. Bitte machen Sie sie auf diese Gelegenheit aufmerksam. \n\nReise-Stipendien\nReiseunterstützung – Der Glenn Padnick Memorial Travel Fund nimmt jetzt Anträge für die ECDGA Konferenz 2026 entgegen. \nGlenn Padnick lebte ein erfülltes und einflussreiches Leben\, während er sich jahrzehntelang mit der Erdheim-Chester-Krankheit (ECD) beschäftigte. Von 2011 bis 2022 gehörte er mit unermüdlichem Engagement dem Vorstand der ECD Global Alliance an und sorgte stets dafür\, dass die Stimmen und Bedürfnisse der Patienten bei jeder Entscheidung im Mittelpunkt standen. \nZu Ehren von Glenns Vermächtnis des Dienstes und des Mitgefühls hat seine Familie großzügig den Glenn Padnick Memorial Travel Fund eingerichtet. Dieser Fonds bietet finanzielle Unterstützung für die Teilnahme von Patienten\, Pflegepersonal und medizinischen Fachkräften an der jährlichen ECD-Konferenz für diejenigen\, die aufgrund finanzieller Engpässe nicht daran teilnehmen können. \nFür die ECD-Konferenz 2026 können Sie jetzt Reisekostenzuschüsse beantragen. Die Mittel sind begrenzt und werden vorrangig an Personen vergeben\, die noch nie an der Veranstaltung teilgenommen haben. Unser Ziel ist es\, mit den verfügbaren Mitteln so vielen Mitgliedern der Gemeinschaft wie möglich diese Gelegenheit zu bieten. \nAnmeldeschluss: 1. Februar 2026 Preisbenachrichtigungen: Nicht später als 1. März 2026 \nHier beantragen: Glenn Padnick Memorial Travel Fund Antrag. \nKonferenz Hotel & Anreise Informationen\nKonferenz Hotel\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nTelefon: +1 (659) 251-1934 \nIm Hilton Birmingham at UAB wurde ein Zimmerkontingent für die Konferenzteilnehmer reserviert.\nDie Zimmer müssen bis zum 6. April 2026 reserviert werden\, um den Gruppentarif zu erhalten. \nZimmer buchen \nWenn Sie Probleme bei der Buchung Ihres Zimmers haben\, wenden Sie sich bitte an Simon Hill im Hilton Birmingham Downtown. Seine Telefonnummer ist 205-910-1970 und seine E-Mail-Adresse ist simon.hill@hiltoncom. \nFlughafen Transport\nBirmingham-Shuttlesworth International Airport (BHM)\nEin kostenloser Shuttle-Service vom Flughafen Birmingham zum Hotel wird direkt vom Hilton Downtown at UAB angeboten. \nUm den Shuttle zu benutzen: \n\nHolen Sie Ihr Gepäck ab.\nRufen Sie das Hotel unter 205-933-9000 an\, um den Shuttle zu bestellen.\nGehen Sie zu Tür 4L und warten Sie auf den Bus mit der Aufschrift “Hilton”.\n\nAnreise über Atlanta\nDer internationale Flughafen Hartsfield-Jackson Atlanta (ATL) ist etwa 3 Stunden von Birmingham entfernt und bietet direkte internationale Flüge in die meisten Länder. Für Reisende\, die über ATL anreisen\, gibt es einen Shuttle-Service zwischen dem Flughafen Atlanta und Birmingham. \nLink zum Shuttle-Service \nKontakt:\nErdheim-Chester Disease Global Alliance\nE-Mail: support@erdheim-chester.org \nRegistrieren Sie sich \nUnsere Sponsoren\n  URL:https://www.erdheim-chester.org/event/11-jaehrliches-ecd-medizinisches-symposium-birmingham-2026/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, 35205\, United States CATEGORIES:Ausgewählt,ECD Medizinisches Symposium ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Medical-Symposium-hd-v2.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260430 DTEND;VALUE=DATE:20260503 DTSTAMP:20260410T171726Z CREATED:20250924T153146Z LAST-MODIFIED:20260410T171726Z UID:10000872-1777507200-1777766399@www.erdheim-chester.org SUMMARY:11º Simposio Médico Anual de la ECD - Birmingham 2026 DESCRIPTION:La Alianza Mundial contra la Enfermedad de Erdheim-Chester anuncia el Simposio Médico 2026 \nBirmingham\, AL – La Alianza Mundial contra la Enfermedad de Erdheim-Chester (ECDGA) y la Facultad de Medicina de la UAB invitan a profesionales sanitarios e investigadores. \n\nSimposio Médico: 30 de abril al 2 de mayo de 2026\n\nJueves\, 30 de abril de 2026\nEncuentro de pacientes y familias: 8:00-16:30\nUbicación: Centro de Conferencias Marnix E. Heersink de la Universidad de Alabama en Birmingham\nCena de celebración: 18:00-20:00\nUbicación: Hilton at UAB Downtown \nViernes\, 1 de mayo de 2026\nSimposio médico: 8:00-17:00\nUbicación: Centro de Conferencias Marnix E. Heersink de la Universidad de Alabama en Birmingham\nRecepción médica del simposio médico: 18:00-20:00\nUbicación: Centro de Conferencias Marnix E. Heersink de la Universidad de Alabama en Birmingham \nSábado\, 2 de mayo de 2026\nReunión del Centro de Atención de ECD: 8:00-11:00\nUbicación: Centro Oncológico de la UAB \nEste acto reunirá a la comunidad mundial de la enfermedad de Erdheim-Chester con destacados expertos médicos para compartir las últimas investigaciones\, perspectivas clínicas y recursos comunitarios. Los asistentes pueden esperar sesiones educativas\, oportunidades de conectar con compañeros y actualizaciones sobre tratamientos emergentes y atención al paciente. \nEn los próximos meses se darán a conocer más detalles sobre el hotel y los aspectos más destacados del programa. \nAgenda\n\n\n\n\n TimeSubjectPresenter\n\n\n\n\n 8:00 amRegistration & light breakfast\n\n\n 8:30 amWelcome to Birmingham and the 11th Annual Erdheim-Chester Disease International ConferenceGaurav Goyal\nUniversity of Alabama at Birmingham\, Birmingham\, AL USA\n\n\n Keynote Address\n\n\n 8:45 am Diversity and Degeneration in\nNeurohistiocytic DiseaseNicole Coufal\nUniversity of California\, San Diego\nUSA\n\n\n 9:25 amBreak\n\n\n Morning Abstract Presentations Session 1: Cells\, Clones & Circuits: Where Histiocytosis Begins (and Persists)\n\n\n 9:35 amARAF Mutations Drive Histiocytic Neoplasms\nIn Vivo and Provide Insights into Cellular\nOriginBenjamin Durham\nRutgers Cancer Institute\, Robert\nWood Johnson School of Medicine\,\nBrunswick\, NJ\n\n\n 9:50 amTracking BRAF V600E Persistence under MEK\nInhibition in Histiocytoses: a B-cell–enriched\nsignalJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 10:05 amDistribution of MAP2K1 Variants Across\nPeripheral Blood Cells in Erdheim-Chester\nDisease and Other HistiocytosesIrena Ungureanu\nAmbroise-Paré Hospital\, Pathology\nDepartment\, Boulogne-Billancourt\,\nFrance\n\n\n 10:20 amThe Clonal Origin and Evolution of High-Risk\nMultisystem Histiocytosis in AdultsMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n 10:35 amNetworking Break\n\n\n Morning Abstract Presentations Session 2: Genotype → Therapy: Biomarkers\, Responses\, and New Vulnerabilities\n\n\n 10:50 amKRAS Mutations in Histiocytic Neoplasms:\nMutation Spectrum and Response to MEK\nInhibitionDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:05 amCyclin D1 Overexpression Drives Replication\nStress and Creates Therapeutic\nVulnerabilities in Histiocytic NeoplasmsDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:20 amClonal Hematopoiesis Predicts Response to\nInterferon-α in Erdheim-Chester Disease and\nMyeloproliferative NeoplasmsJérôme Razanamahery\nDijon University Hospital\, France\n\n\n 11:35 amImpact of Additional Genetic Variants in the\nCourse of Erdheim-Chester Disease… a\nMulticentric Longitudinal Study of 445 French\nPatientsFélicien Triboulet\nPitié-Salpêtrière hospital\, Sorbonne\nUniversity\, Paris\, France\n\n\n 11:50 amGroup Photo\n\n\n 12:00 pmLunch\n\n\n Afternoon Abstract Presentations Session 3: Pixels to Patterns: ECD and Xanthogranuloma\n\n\n 1:00 pmCentral Nervous System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:15 pmMusculoskeletal System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:30 pmPatterns of Presentation and Outcomes in\nAdult XanthogranulomaGuneet Janda\nMayo Clinic\, Rochester\, MN USA\n\n\n 1:45 pmNetworking Break\n\n\n Afternoon Abstract Presentations Session 4: Care in the Real World: Treatment Patterns and Survivorship\n\n\n 2:00 pmReal World Frontline Systemic Anti-Cancer\nTreatment Patterns and Outcomes in\nErdheim–Chester DiseaseCarla Isabel Borre\nMayo Clinic\, Rochester\, MN USA\n\n\n 2:15 pmBurden of Chronic Health Conditions After\nDiagnosis of Erdheim–Chester Disease\n(ECD): Early Results from the Histiocytic\nDisorder Survivor StudyGaurav Goyal\nUniversity of Alabama at\nBirmingham\, Birmingham\, AL USA\n\n\n 2:30 pmDestombes-Rosai-Dorfman Disease:\nClinical\, Molecular Characteristics and\nTreatment Response: data from a\nretrospective cohort of 107 patientsJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 2:45 pmConsiderations for Assessment and\nTreatment of Neuropsychiatric Symptoms in\nECDAnneka Johnston\nRush University Medical Center\,\nChicago IL\n\n\n Poster Presentations and Networking\n\n\n 3:00 pmErdheim-Chester Disease (ECD) is a Rare\nHistiocytic Neoplasm of Non-Langerhans\nCell HistiocytosisAbdalla Bowirrat\nAriel University\, Israel\n\n\n Diagnostic challenges in mixed ErdheimChester Disease and Langerhans Cell\nHistiocytosis in a 54-year-old maleSameer Andani\nMofitt Cancer Center & University\nof South Florida\n\n\n A Mycosis Fungoides-like Drug Reaction\nRapidly Resolving Following Switch from\nBRAF Inhibitor to MEK Inhibitor Monotherapy\nin Erdheim-Chester DiseaseSaipriya Ayyar\nUniversity of Cincinnati/UC Health\,\nCincinnati OH\n\n\n Multimodality Imaging in Erdheim–Chester\nDisease: Radiologic Insights from Pediatric\nand Adult CasesPriyanka Naranje\nAll India Institute of Medical\nSciences\, New Delhi\, India\n\n\n Cardiovascular System Imaging\nAbnormalities in Erdheim-Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n BRAF-Positive Erdheim–Chester Disease with\nProgressive Pulmonary and Vascular\nInvolvement Successfully Treated with\nVemurafenib: A Case ReportHulya Yilmaz Tekinhatun\nDiyarbakir Gazi Yasargil Training and\nResearch Hospital\, Turkey\n\n\n Concurrent Erdheim-Chester Disease and\nClassical Hodgkin Lymphoma with\nunexpected response to lymphoma-directed\ntherapyRebecca Denson\nNew York Presbyterian-Weill Cornell\nMedicine\, New York\, NY\n\n\n Abdominal Imaging Abnormalities in\nErdheim-Chester Disease: A Systematic\nReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n Prevalence and distribution of ErdheimChester Disease in the UK estimated from\nreferral to a National Advisory PanelMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 3:45 pmAll that glitters: retro-orbital\nxanthogranuloma or ECD?Matthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 4:15 pmThe Clue Was the Blood Pressure: Atypical\nErdheim–Chester DiseaseJithma Abeykoon\nMayo Clinic\, Rochester\, MN USA\n\n\n Closing Remarks & Student Abstract Award\n\n\n 4:45 pmECD Global Alliance into the FutureJerome Henson\nExecutive Director\, ECD Global\nAlliance\, DeRidder\, LA USA\n\n\n 4:55 pmJunior Investigator – Best Student\nPresentation AwardOshrat Hershkovitz-Rokah\nAriel University & Assut\n\n\n\n\nDescargar agenda \nRegístrate en \nNOTA: ¡Inscríbete antes del 1 de febrero para aprovechar el coste de inscripción anticipada! ¡Ahorra 200 USD y regístrate por sólo 300 USD! \nPremio Mark Heaney a la Sensibilización y Premio al Campeón de la Comunidad\n1 de febrero de 2026 – Último día para presentar tu candidatura al Premio Mark Heaney a la Concienciación y al Premio al Campeón de la Comunidad . \n\nPor favor\, envía tus candidaturas aquí.\n\nPremio Mark Heaney a la Concienciación. Nomina a un profesional médico que trabaje para mejorar la vida de los pacientes de ECD\, sensibilizando a la profesión médica sobre la enfermedad. \nPremio al Campeón de la Comunidad. Nomina a cualquier persona (paciente\, cuidador\, profesional médico\, amigo\, etc.) que haya dedicado su tiempo voluntariamente a ayudar a mejorar la vida de todas las personas afectadas por el ECD. \n\n\n\nResúmenes de presentaciones orales / póster\n1 de febrero de 2026- Presentación de resúmenes. \n\nAquí se acepta la presentación de resúmenes para el Simposio Médico del 1 de mayo Por favor\, envía resúmenes para su presentación oral y/o en póster. Es una gran oportunidad para compartir tu trabajo y el de tus colegas. Por favor\, hazles partícipes de esta oportunidad. \n\nBecas de viaje\nAyuda para viajes – Fondo para viajes en memoria de Glenn Padnick Se aceptan solicitudes para la Conferencia de la ECDGA de 2026. \nGlenn Padnick vivió una vida plena e impactante mientras navegaba por la enfermedad de Erdheim-Chester (ECD) durante décadas. De 2011 a 2022\, trabajó con dedicación inquebrantable en la Junta Directiva de la Alianza Global ECD\, asegurándose siempre de que las voces y necesidades de los pacientes ocuparan un lugar central en cada decisión. \nEn honor al legado de servicio y compasión de Glenn\, su familia creó generosamente el Fondo de Viajes en Memoria de Glenn Padnick. Este fondo proporciona ayuda económica para que los pacientes\, cuidadores y profesionales de la medicina puedan asistir a la conferencia anual de la ECD a quienes\, de otro modo\, no podrían participar debido a limitaciones económicas. \nYa están abiertas las solicitudes de ayuda de viaje para la Conferencia ECD 2026. La financiación es limitada\, y se dará prioridad a las personas que no hayan asistido nunca al evento. Nuestro objetivo es poner esta oportunidad a disposición del mayor número posible de miembros de la comunidad con los recursos disponibles. \nPlazo de solicitud: 1 de febrero de 2026 Notificaciones de adjudicación: A más tardar el 1 de marzo de 2026 \nSolicítalo aquí: Solicitud del Fondo para Viajes en Memoria de Glenn Padnick. \nInformación sobre hoteles y viajes\nHotel de Congresos\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nTeléfono: +1 (659) 251-1934 \nSe ha reservado un bloque de habitaciones en el Hilton Birmingham de la UAB para los asistentes a la conferencia.\nLas habitaciones deben reservarse antes del 6 de abril de 2026 para recibir la tarifa de grupo. \nReservar una habitación \nSi tiene algún problema al reservar su habitación\, póngase en contacto con Simon Hill en el Hilton Birmingham Downtown. Su número es el 205-910-1970 y su correo electrónico es simon.hill@hiltoncom. \nTransporte al aeropuerto\nAeropuerto Internacional de Birmingham-Shuttlesworth (BHM)\nHay un servicio gratuito de lanzadera desde el aeropuerto de Birmingham hasta el hotel\, proporcionado directamente por el Hilton Downtown de la UAB. \nPara utilizar la lanzadera: \n\nRecoge tu equipaje.\nLlama al hotel al 205-933-9000 para solicitar el servicio de transporte.\nDirígete a la puerta nº 4L y espera el autobús marcado “Hilton”.\n\nViajar vía Atlanta\nEl Aeropuerto Internacional Hartsfield-Jackson de Atlanta (ATL) está a unas 3 horas de Birmingham y ofrece vuelos internacionales directos a la mayoría de los países. Hay servicios de enlace entre el aeropuerto de Atlanta y Birmingham para los viajeros que lleguen a través de ATL. \nEnlace al servicio de transporte \nContacto:\nErdheim-Alianza Mundial contra la Enfermedad de Chester\nCorreo electrónico: support@erdheim-chester.org \nRegístrate en \nNuestros patrocinadores\n  URL:https://www.erdheim-chester.org/event/11o-simposio-medico-anual-de-la-ecd-birmingham-2026/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, 35205\, United States CATEGORIES:Destacado,ECD Simposio médico ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Medical-Symposium-hd-v2.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260430 DTEND;VALUE=DATE:20260503 DTSTAMP:20260410T171936Z CREATED:20250924T153146Z LAST-MODIFIED:20260410T171936Z UID:10000880-1777507200-1777766399@www.erdheim-chester.org SUMMARY:11e symposium médical annuel des ECD - Birmingham 2026 DESCRIPTION:L’Alliance mondiale pour la maladie d’Erdheim-Chester annonce le symposium médical de 2026 \nBirmingham\, AL – L’Alliance mondiale pour la maladie d’Erdheim-Chester (ECDGA) et l’École de médecine de l’UAB invitent les professionnels de la santé et les chercheurs. \n\nSymposium médical : 30 avril-2 mai 2026\n\nJeudi 30 avril 2026\nRassemblement des patients et des familles : 8h00-16h30\nLieu : Marnix E. Heersink Conference Center à l’Université d’Alabama à Birmingham\nDîner de célébration : 18h00-20h00\nLieu : Hilton at UAB Downtown \nVendredi 1er mai 2026\nSymposium médical : 8h00-17h00\nLieu : Marnix E. Heersink Conference Center à l’Université d’Alabama à Birmingham\nRéception médicale du symposium médical : 18h00-20h00\nLieu : Marnix E. Heersink Conference Center à l’Université d’Alabama à Birmingham \nSamedi 2 mai 2026\nRéunion du centre de soins ECD : 8h00-11h00\nLieu : UAB Cancer Center \nCet événement réunira la communauté mondiale de la maladie d’Erdheim-Chester avec des experts médicaux de premier plan pour partager les dernières recherches\, les perspectives cliniques et les ressources de la communauté. Les participants peuvent s’attendre à des sessions éducatives\, à des opportunités de se connecter avec leurs pairs et à des mises à jour sur les traitements émergents et les soins aux patients. \nDe plus amples informations sur l’hôtel et les points forts du programme seront communiquées dans les mois à venir. \nL’ordre du jour\n\n\n\n\n TimeSubjectPresenter\n\n\n\n\n 8:00 amRegistration & light breakfast\n\n\n 8:30 amWelcome to Birmingham and the 11th Annual Erdheim-Chester Disease International ConferenceGaurav Goyal\nUniversity of Alabama at Birmingham\, Birmingham\, AL USA\n\n\n Keynote Address\n\n\n 8:45 am Diversity and Degeneration in\nNeurohistiocytic DiseaseNicole Coufal\nUniversity of California\, San Diego\nUSA\n\n\n 9:25 amBreak\n\n\n Morning Abstract Presentations Session 1: Cells\, Clones & Circuits: Where Histiocytosis Begins (and Persists)\n\n\n 9:35 amARAF Mutations Drive Histiocytic Neoplasms\nIn Vivo and Provide Insights into Cellular\nOriginBenjamin Durham\nRutgers Cancer Institute\, Robert\nWood Johnson School of Medicine\,\nBrunswick\, NJ\n\n\n 9:50 amTracking BRAF V600E Persistence under MEK\nInhibition in Histiocytoses: a B-cell–enriched\nsignalJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 10:05 amDistribution of MAP2K1 Variants Across\nPeripheral Blood Cells in Erdheim-Chester\nDisease and Other HistiocytosesIrena Ungureanu\nAmbroise-Paré Hospital\, Pathology\nDepartment\, Boulogne-Billancourt\,\nFrance\n\n\n 10:20 amThe Clonal Origin and Evolution of High-Risk\nMultisystem Histiocytosis in AdultsMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n 10:35 amNetworking Break\n\n\n Morning Abstract Presentations Session 2: Genotype → Therapy: Biomarkers\, Responses\, and New Vulnerabilities\n\n\n 10:50 amKRAS Mutations in Histiocytic Neoplasms:\nMutation Spectrum and Response to MEK\nInhibitionDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:05 amCyclin D1 Overexpression Drives Replication\nStress and Creates Therapeutic\nVulnerabilities in Histiocytic NeoplasmsDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:20 amClonal Hematopoiesis Predicts Response to\nInterferon-α in Erdheim-Chester Disease and\nMyeloproliferative NeoplasmsJérôme Razanamahery\nDijon University Hospital\, France\n\n\n 11:35 amImpact of Additional Genetic Variants in the\nCourse of Erdheim-Chester Disease… a\nMulticentric Longitudinal Study of 445 French\nPatientsFélicien Triboulet\nPitié-Salpêtrière hospital\, Sorbonne\nUniversity\, Paris\, France\n\n\n 11:50 amGroup Photo\n\n\n 12:00 pmLunch\n\n\n Afternoon Abstract Presentations Session 3: Pixels to Patterns: ECD and Xanthogranuloma\n\n\n 1:00 pmCentral Nervous System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:15 pmMusculoskeletal System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:30 pmPatterns of Presentation and Outcomes in\nAdult XanthogranulomaGuneet Janda\nMayo Clinic\, Rochester\, MN USA\n\n\n 1:45 pmNetworking Break\n\n\n Afternoon Abstract Presentations Session 4: Care in the Real World: Treatment Patterns and Survivorship\n\n\n 2:00 pmReal World Frontline Systemic Anti-Cancer\nTreatment Patterns and Outcomes in\nErdheim–Chester DiseaseCarla Isabel Borre\nMayo Clinic\, Rochester\, MN USA\n\n\n 2:15 pmBurden of Chronic Health Conditions After\nDiagnosis of Erdheim–Chester Disease\n(ECD): Early Results from the Histiocytic\nDisorder Survivor StudyGaurav Goyal\nUniversity of Alabama at\nBirmingham\, Birmingham\, AL USA\n\n\n 2:30 pmDestombes-Rosai-Dorfman Disease:\nClinical\, Molecular Characteristics and\nTreatment Response: data from a\nretrospective cohort of 107 patientsJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 2:45 pmConsiderations for Assessment and\nTreatment of Neuropsychiatric Symptoms in\nECDAnneka Johnston\nRush University Medical Center\,\nChicago IL\n\n\n Poster Presentations and Networking\n\n\n 3:00 pmErdheim-Chester Disease (ECD) is a Rare\nHistiocytic Neoplasm of Non-Langerhans\nCell HistiocytosisAbdalla Bowirrat\nAriel University\, Israel\n\n\n Diagnostic challenges in mixed ErdheimChester Disease and Langerhans Cell\nHistiocytosis in a 54-year-old maleSameer Andani\nMofitt Cancer Center & University\nof South Florida\n\n\n A Mycosis Fungoides-like Drug Reaction\nRapidly Resolving Following Switch from\nBRAF Inhibitor to MEK Inhibitor Monotherapy\nin Erdheim-Chester DiseaseSaipriya Ayyar\nUniversity of Cincinnati/UC Health\,\nCincinnati OH\n\n\n Multimodality Imaging in Erdheim–Chester\nDisease: Radiologic Insights from Pediatric\nand Adult CasesPriyanka Naranje\nAll India Institute of Medical\nSciences\, New Delhi\, India\n\n\n Cardiovascular System Imaging\nAbnormalities in Erdheim-Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n BRAF-Positive Erdheim–Chester Disease with\nProgressive Pulmonary and Vascular\nInvolvement Successfully Treated with\nVemurafenib: A Case ReportHulya Yilmaz Tekinhatun\nDiyarbakir Gazi Yasargil Training and\nResearch Hospital\, Turkey\n\n\n Concurrent Erdheim-Chester Disease and\nClassical Hodgkin Lymphoma with\nunexpected response to lymphoma-directed\ntherapyRebecca Denson\nNew York Presbyterian-Weill Cornell\nMedicine\, New York\, NY\n\n\n Abdominal Imaging Abnormalities in\nErdheim-Chester Disease: A Systematic\nReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n Prevalence and distribution of ErdheimChester Disease in the UK estimated from\nreferral to a National Advisory PanelMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 3:45 pmAll that glitters: retro-orbital\nxanthogranuloma or ECD?Matthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 4:15 pmThe Clue Was the Blood Pressure: Atypical\nErdheim–Chester DiseaseJithma Abeykoon\nMayo Clinic\, Rochester\, MN USA\n\n\n Closing Remarks & Student Abstract Award\n\n\n 4:45 pmECD Global Alliance into the FutureJerome Henson\nExecutive Director\, ECD Global\nAlliance\, DeRidder\, LA USA\n\n\n 4:55 pmJunior Investigator – Best Student\nPresentation AwardOshrat Hershkovitz-Rokah\nAriel University & Assut\n\n\n\n\nTélécharger l’ordre du jour \nRegistre \nREMARQUE : Inscrivez-vous avant le 1er février pour bénéficier du tarif préférentiel ! Economisez 200 USD et inscrivez-vous pour seulement 300 USD ! \nPrix Mark Heaney de la sensibilisation et prix du champion de la communauté\n1er février 2026 – Dernier jour pour soumettre votre candidature au Prix Mark Heaney de la sensibilisation et au Prix du champion de la communauté. \n\nVeuillez soumettre vos nominations ici.\n\nPrix de sensibilisation Mark Heaney. Proposez la candidature d’un professionnel de la santé qui s’efforce d’améliorer la vie des patients atteints de ECD en sensibilisant le corps médical à cette maladie. \nPrix du champion de la communauté. Proposez la candidature d’une personne (patient\, soignant\, professionnel de la santé\, ami\, etc.) qui a donné de son temps pour améliorer la vie de toutes les personnes touchées par le ECD. \n\n\n\nRésumés des présentations orales / posters\n1er février 2026- Date limite de remise des résumés. \n\nLes soumissions de résumés pour le symposium médical du 1er mai sont acceptées ici Veuillez soumettre des résumés pour une présentation orale et/ou par affiche. Il s’agit d’une excellente occasion de partager votre travail et celui de vos collègues. N’hésitez pas à leur en faire part. \n\nBourses de voyage\nAide au voyage – Le fonds de voyage à la mémoire de Glenn Padnick Accepte désormais les demandes pour la conférence de l’ECDGA de 2026. \nGlenn Padnick a vécu une vie pleine et impactante tout en naviguant dans la maladie d’Erdheim-Chester (ECD) pendant des décennies. De 2011 à 2022\, il a siégé avec un dévouement sans faille au conseil d’administration de l’Alliance mondiale ECD\, veillant toujours à ce que la voix et les besoins des patients restent au cœur de chaque décision. \nEn hommage à l’héritage de service et de compassion de Glenn\, sa famille a généreusement créé le Glenn Padnick Memorial Travel Fund. Ce fonds fournit une assistance financière pour aider les patients\, les soignants et les professionnels de la santé à assister à la conférence annuelle de l’ECD pour ceux qui ne pourraient pas y participer en raison de contraintes financières. \nLes demandes d’aide au voyage pour la conférence ECD 2026 sont désormais ouvertes. Les fonds sont limités et la priorité sera donnée aux personnes qui n’ont jamais participé à cet événement. Notre objectif est de permettre au plus grand nombre possible de membres de la communauté d’accéder à cette opportunité avec les ressources disponibles. \nDate limite de dépôt des candidatures : 1er février 2026 Notifications d’attribution : Au plus tard le 1er mars 2026 \nPostulez ici : Demande de fonds de voyage à la mémoire de Glenn Padnick. \nInformations sur l’hôtel et les déplacements pour la conférence\nHôtel de conférence\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nPhone : +1 (659) 251-1934 \nUn bloc de chambres a été réservé au Hilton Birmingham at UAB pour les participants à la conférence.\nLes chambres doivent être réservées avant le 6 avril 2026 pour bénéficier du tarif de groupe. \nRéserver une chambre \nSi vous rencontrez des problèmes pour réserver votre chambre\, veuillez contacter Simon Hill au Hilton Birmingham Downtown. Son numéro est 205-910-1970 et son adresse e-mail est simon.hill@hiltoncom. \nTransport aéroportuaire\nAéroport international de Birmingham-Shuttlesworth (BHM)\nUn service de navette gratuit est disponible de l’aéroport de Birmingham à l’hôtel et est fourni directement par le Hilton Downtown at UAB. \nPour utiliser la navette : \n\nRécupérez vos bagages.\nAppelez l’hôtel au 205-933-9000 pour demander la navette.\nRendez-vous à la porte 4L et attendez le bus marqué “Hilton”.\n\nVoyage via Atlanta\nL’aéroport international Hartsfield-Jackson d’Atlanta (ATL) se trouve à environ 3 heures de Birmingham et propose des vols internationaux directs vers la plupart des pays. Des services de navette sont disponibles entre l’aéroport d’Atlanta et Birmingham pour les voyageurs arrivant par ATL. \nLien du service de navette \nContact :\nErdheim-Chester Disease Global Alliance\nEmail : support@erdheim-chester.org \nRegistre \nNos sponsors\n  URL:https://www.erdheim-chester.org/event/11e-symposium-medical-annuel-des-ecd-birmingham-2026/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, 35205\, United States CATEGORIES:ECD Symposium médical,En vedette ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Medical-Symposium-hd-v2.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260430 DTEND;VALUE=DATE:20260503 DTSTAMP:20260410T171727Z CREATED:20250924T153146Z LAST-MODIFIED:20260410T171727Z UID:10000873-1777507200-1777766399@www.erdheim-chester.org SUMMARY:11º Simpósio Médico Anual do ECD - Birmingham 2026 DESCRIPTION:A Aliança Global da Doença de Erdheim-Chester anuncia o Simpósio Médico de 2026 \nBirmingham\, AL – A Erdheim-Chester Disease Global Alliance (ECDGA) e a Faculdade de Medicina da UAB convidam profissionais de saúde e pesquisadores. \n\nSimpósio Médico: 30 de abril a 2 de maio de 2026\n\nQuinta-feira\, 30 de abril de 2026\nEncontro de Pacientes e Familiares: 08:00–16:30\nLocal: Marnix E. Heersink Conference Center na University of Alabama at Birmingham\nJantar de Celebração: 18:00–20:00\nLocal: Hilton at UAB Downtown \nSexta-feira\, 1 de maio de 2026\nSimpósio Médico: 08:00–17:00\nLocal: Marnix E. Heersink Conference Center na University of Alabama at Birmingham\nRecepção Médica do Simpósio Médico: 18:00–20:00\nLocal: Marnix E. Heersink Conference Center na University of Alabama at Birmingham \nSábado\, 2 de maio de 2026\nReunião do Centro de Cuidado de ECD: 08:00–11:00\nLocal: UAB Cancer Center \nEsse evento reunirá a comunidade global da doença de Erdheim-Chester com os principais especialistas médicos para compartilhar as mais recentes pesquisas\, percepções clínicas e recursos da comunidade. Os participantes podem esperar sessões educacionais\, oportunidades de se conectar com colegas e atualizações sobre tratamentos emergentes e cuidados com os pacientes. \nMais detalhes sobre o hotel e os destaques do programa serão divulgados nos próximos meses. \nAgenda\n\n\n\n\n TimeSubjectPresenter\n\n\n\n\n 8:00 amRegistration & light breakfast\n\n\n 8:30 amWelcome to Birmingham and the 11th Annual Erdheim-Chester Disease International ConferenceGaurav Goyal\nUniversity of Alabama at Birmingham\, Birmingham\, AL USA\n\n\n Keynote Address\n\n\n 8:45 am Diversity and Degeneration in\nNeurohistiocytic DiseaseNicole Coufal\nUniversity of California\, San Diego\nUSA\n\n\n 9:25 amBreak\n\n\n Morning Abstract Presentations Session 1: Cells\, Clones & Circuits: Where Histiocytosis Begins (and Persists)\n\n\n 9:35 amARAF Mutations Drive Histiocytic Neoplasms\nIn Vivo and Provide Insights into Cellular\nOriginBenjamin Durham\nRutgers Cancer Institute\, Robert\nWood Johnson School of Medicine\,\nBrunswick\, NJ\n\n\n 9:50 amTracking BRAF V600E Persistence under MEK\nInhibition in Histiocytoses: a B-cell–enriched\nsignalJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 10:05 amDistribution of MAP2K1 Variants Across\nPeripheral Blood Cells in Erdheim-Chester\nDisease and Other HistiocytosesIrena Ungureanu\nAmbroise-Paré Hospital\, Pathology\nDepartment\, Boulogne-Billancourt\,\nFrance\n\n\n 10:20 amThe Clonal Origin and Evolution of High-Risk\nMultisystem Histiocytosis in AdultsMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n 10:35 amNetworking Break\n\n\n Morning Abstract Presentations Session 2: Genotype → Therapy: Biomarkers\, Responses\, and New Vulnerabilities\n\n\n 10:50 amKRAS Mutations in Histiocytic Neoplasms:\nMutation Spectrum and Response to MEK\nInhibitionDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:05 amCyclin D1 Overexpression Drives Replication\nStress and Creates Therapeutic\nVulnerabilities in Histiocytic NeoplasmsDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:20 amClonal Hematopoiesis Predicts Response to\nInterferon-α in Erdheim-Chester Disease and\nMyeloproliferative NeoplasmsJérôme Razanamahery\nDijon University Hospital\, France\n\n\n 11:35 amImpact of Additional Genetic Variants in the\nCourse of Erdheim-Chester Disease… a\nMulticentric Longitudinal Study of 445 French\nPatientsFélicien Triboulet\nPitié-Salpêtrière hospital\, Sorbonne\nUniversity\, Paris\, France\n\n\n 11:50 amGroup Photo\n\n\n 12:00 pmLunch\n\n\n Afternoon Abstract Presentations Session 3: Pixels to Patterns: ECD and Xanthogranuloma\n\n\n 1:00 pmCentral Nervous System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:15 pmMusculoskeletal System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:30 pmPatterns of Presentation and Outcomes in\nAdult XanthogranulomaGuneet Janda\nMayo Clinic\, Rochester\, MN USA\n\n\n 1:45 pmNetworking Break\n\n\n Afternoon Abstract Presentations Session 4: Care in the Real World: Treatment Patterns and Survivorship\n\n\n 2:00 pmReal World Frontline Systemic Anti-Cancer\nTreatment Patterns and Outcomes in\nErdheim–Chester DiseaseCarla Isabel Borre\nMayo Clinic\, Rochester\, MN USA\n\n\n 2:15 pmBurden of Chronic Health Conditions After\nDiagnosis of Erdheim–Chester Disease\n(ECD): Early Results from the Histiocytic\nDisorder Survivor StudyGaurav Goyal\nUniversity of Alabama at\nBirmingham\, Birmingham\, AL USA\n\n\n 2:30 pmDestombes-Rosai-Dorfman Disease:\nClinical\, Molecular Characteristics and\nTreatment Response: data from a\nretrospective cohort of 107 patientsJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 2:45 pmConsiderations for Assessment and\nTreatment of Neuropsychiatric Symptoms in\nECDAnneka Johnston\nRush University Medical Center\,\nChicago IL\n\n\n Poster Presentations and Networking\n\n\n 3:00 pmErdheim-Chester Disease (ECD) is a Rare\nHistiocytic Neoplasm of Non-Langerhans\nCell HistiocytosisAbdalla Bowirrat\nAriel University\, Israel\n\n\n Diagnostic challenges in mixed ErdheimChester Disease and Langerhans Cell\nHistiocytosis in a 54-year-old maleSameer Andani\nMofitt Cancer Center & University\nof South Florida\n\n\n A Mycosis Fungoides-like Drug Reaction\nRapidly Resolving Following Switch from\nBRAF Inhibitor to MEK Inhibitor Monotherapy\nin Erdheim-Chester DiseaseSaipriya Ayyar\nUniversity of Cincinnati/UC Health\,\nCincinnati OH\n\n\n Multimodality Imaging in Erdheim–Chester\nDisease: Radiologic Insights from Pediatric\nand Adult CasesPriyanka Naranje\nAll India Institute of Medical\nSciences\, New Delhi\, India\n\n\n Cardiovascular System Imaging\nAbnormalities in Erdheim-Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n BRAF-Positive Erdheim–Chester Disease with\nProgressive Pulmonary and Vascular\nInvolvement Successfully Treated with\nVemurafenib: A Case ReportHulya Yilmaz Tekinhatun\nDiyarbakir Gazi Yasargil Training and\nResearch Hospital\, Turkey\n\n\n Concurrent Erdheim-Chester Disease and\nClassical Hodgkin Lymphoma with\nunexpected response to lymphoma-directed\ntherapyRebecca Denson\nNew York Presbyterian-Weill Cornell\nMedicine\, New York\, NY\n\n\n Abdominal Imaging Abnormalities in\nErdheim-Chester Disease: A Systematic\nReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n Prevalence and distribution of ErdheimChester Disease in the UK estimated from\nreferral to a National Advisory PanelMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 3:45 pmAll that glitters: retro-orbital\nxanthogranuloma or ECD?Matthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 4:15 pmThe Clue Was the Blood Pressure: Atypical\nErdheim–Chester DiseaseJithma Abeykoon\nMayo Clinic\, Rochester\, MN USA\n\n\n Closing Remarks & Student Abstract Award\n\n\n 4:45 pmECD Global Alliance into the FutureJerome Henson\nExecutive Director\, ECD Global\nAlliance\, DeRidder\, LA USA\n\n\n 4:55 pmJunior Investigator – Best Student\nPresentation AwardOshrat Hershkovitz-Rokah\nAriel University & Assut\n\n\n\n\nBaixar Agenda \nRegistro \nOBSERVAÇÃO: Inscreva-se antes de 1º de fevereiro para aproveitar o custo de inscrição antecipada! Economize US$ 200 e inscreva-se por apenas US$ 300! \nPrêmio Mark Heaney de Conscientização e Prêmio Campeão da Comunidade\n1º de fevereiro de 2026 – Último dia para enviar sua indicação para o Mark Heaney Awareness Award e o Community Champion Award. \n\nEnvie suas indicações aqui.\n\nPrêmio Mark Heaney de Conscientização. Indique um profissional da área médica que esteja trabalhando para melhorar a vida dos pacientes com DPI\, conscientizando a profissão médica sobre a doença. \nPrêmio Campeão da Comunidade. Indique qualquer pessoa (paciente\, cuidador\, profissional da área médica\, amigo\, etc.) que tenha oferecido seu tempo para ajudar a melhorar a vida de todas as pessoas afetadas pelo DPI. \n\n\n\nResumos de apresentações orais/pôsteres\n1º de fevereiro de 2026 – Prazo para entrega dos resumos. \n\nAs submissões de resumos para o Simpósio Médico\, em 1º de maio\, são aceitas aqui Envie resumos para apresentação oral e/ou pôster. Essa é uma ótima oportunidade para você compartilhar seu trabalho e o trabalho de seus colegas. Informe-os sobre essa oportunidade. \n\nBolsas de estudo para viagens\nAssistência de viagem – O Glenn Padnick Memorial Travel Fund Está aceitando inscrições para a Conferência ECDGA de 2026. \nGlenn Padnick viveu uma vida plena e impactante enquanto lidava com a doença de Erdheim-Chester (ECD) por décadas. De 2011 a 2022\, ele atuou com dedicação inabalável na Diretoria da ECD Global Alliance\, sempre garantindo que as vozes e as necessidades dos pacientes permanecessem no centro de todas as decisões. \nEm homenagem ao legado de serviço e compaixão de Glenn\, sua família criou generosamente o Glenn Padnick Memorial Travel Fund. Esse fundo oferece assistência financeira para ajudar pacientes\, cuidadores e profissionais da área médica a participar da conferência anual do ECD para aqueles que\, de outra forma\, não poderiam participar devido a restrições financeiras. \nEstão abertas as inscrições para assistência de viagem para a Conferência ECD 2026. O financiamento é limitado e será dada prioridade a pessoas que nunca participaram do evento antes. Nosso objetivo é oferecer essa oportunidade ao maior número possível de membros da comunidade com os recursos disponíveis. \nPrazo de inscrição: 1º de fevereiro de 2026 Notificações de prêmios: No máximo até 1º de março de 2026 \nInscreva-se aqui: Solicitação do Glenn Padnick Memorial Travel Fund. \nInformações sobre hotéis e viagens para a conferência\nHotel para conferências\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nTelefone: +1 (659) 251-1934 \nUm bloco de quartos foi reservado no Hilton Birmingham at UAB para os participantes da conferência.\nOs quartos devem ser reservados até 6 de abril de 2026 para que você receba a tarifa do grupo. \nReserve um quarto \nSe tiver algum problema ao reservar seu quarto\, entre em contato com Simon Hill no Hilton Birmingham Downtown. O número dele é 205-910-1970 e o e-mail é simon.hill@hiltoncom. \nTransporte para o aeroporto\nAeroporto Internacional de Birmingham-Shuttlesworth (BHM)\nO serviço de traslado gratuito está disponível do aeroporto de Birmingham para o hotel e é fornecido diretamente pelo Hilton Downtown at UAB. \nPara usar o traslado: \n\nRecolha sua bagagem.\nLigue para o hotel no número 205-933-9000 para solicitar o traslado.\nDirija-se à porta nº 4L e aguarde o ônibus marcado como “Hilton”.\n\nViajando via Atlanta\nO Aeroporto Internacional Hartsfield-Jackson Atlanta (ATL) fica a aproximadamente 3 horas de Birmingham e oferece voos internacionais diretos para a maioria dos países. Há serviços de traslado disponíveis entre o aeroporto de Atlanta e Birmingham para os viajantes que chegam pelo ATL. \nLink do serviço de traslado \nContato:\nErdheim-Chester Disease Global Alliance\nE-mail: support@erdheim-chester.org \nRegistro \nNossos Patrocinadores\n  URL:https://www.erdheim-chester.org/event/11o-simposio-medico-anual-do-ecd-birmingham-2026/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, 35205\, United States CATEGORIES:ECD Simpósio Médico,Em destaque ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Medical-Symposium-hd-v2.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260430 DTEND;VALUE=DATE:20260503 DTSTAMP:20260410T171931Z CREATED:20250924T153146Z LAST-MODIFIED:20260410T171931Z UID:10000881-1777507200-1777766399@www.erdheim-chester.org SUMMARY:11e jaarlijkse ECD medisch symposium - Birmingham 2026 DESCRIPTION:Erdheim-Chester Disease Wereldwijde Alliantie kondigt 2026 Medisch Symposium aan \nBirmingham\, AL – De Erdheim-Chester Disease Global Alliance (ECDGA) en UAB School of Medicine nodigen professionals in de gezondheidszorg en onderzoekers uit. \n\nMedisch Symposium: 30 april – 2 mei 2026\n\nDonderdag 30 april 2026\nBijeenkomst voor patiënten en families: 8u00-16u30\nLocatie: Marnix E. Heersink Conference Center aan de University of Alabama at Birmingham\nFeestelijk diner: 18u00-20u00\nLocatie: Hilton at UAB Downtown \nVrijdag 1 mei 2026\nMedisch symposium: 8u00-17u00\nLocatie: Marnix E. Heersink Conference Center aan de University of Alabama at Birmingham\nMedische receptie medisch symposium: 18u00-20u00\nLocatie: Marnix E. Heersink Conference Center aan de University of Alabama at Birmingham \nZaterdag 2 mei 2026\nVergadering ECD-zorgcentrum: 8u00-11u00\nLocatie: UAB Cancer Center \nDit evenement brengt de wereldwijde gemeenschap van Erdheim-Chester samen met vooraanstaande medische experts om het laatste onderzoek\, klinische inzichten en hulpmiddelen voor de gemeenschap te delen. Deelnemers kunnen educatieve sessies verwachten\, gelegenheden om in contact te komen met collega’s en updates over nieuwe behandelingen en patiëntenzorg. \nMeer details over het hotel en de hoogtepunten van het programma worden de komende maanden bekendgemaakt. \nAgenda\n\n\n\n\n TimeSubjectPresenter\n\n\n\n\n 8:00 amRegistration & light breakfast\n\n\n 8:30 amWelcome to Birmingham and the 11th Annual Erdheim-Chester Disease International ConferenceGaurav Goyal\nUniversity of Alabama at Birmingham\, Birmingham\, AL USA\n\n\n Keynote Address\n\n\n 8:45 am Diversity and Degeneration in\nNeurohistiocytic DiseaseNicole Coufal\nUniversity of California\, San Diego\nUSA\n\n\n 9:25 amBreak\n\n\n Morning Abstract Presentations Session 1: Cells\, Clones & Circuits: Where Histiocytosis Begins (and Persists)\n\n\n 9:35 amARAF Mutations Drive Histiocytic Neoplasms\nIn Vivo and Provide Insights into Cellular\nOriginBenjamin Durham\nRutgers Cancer Institute\, Robert\nWood Johnson School of Medicine\,\nBrunswick\, NJ\n\n\n 9:50 amTracking BRAF V600E Persistence under MEK\nInhibition in Histiocytoses: a B-cell–enriched\nsignalJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 10:05 amDistribution of MAP2K1 Variants Across\nPeripheral Blood Cells in Erdheim-Chester\nDisease and Other HistiocytosesIrena Ungureanu\nAmbroise-Paré Hospital\, Pathology\nDepartment\, Boulogne-Billancourt\,\nFrance\n\n\n 10:20 amThe Clonal Origin and Evolution of High-Risk\nMultisystem Histiocytosis in AdultsMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n 10:35 amNetworking Break\n\n\n Morning Abstract Presentations Session 2: Genotype → Therapy: Biomarkers\, Responses\, and New Vulnerabilities\n\n\n 10:50 amKRAS Mutations in Histiocytic Neoplasms:\nMutation Spectrum and Response to MEK\nInhibitionDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:05 amCyclin D1 Overexpression Drives Replication\nStress and Creates Therapeutic\nVulnerabilities in Histiocytic NeoplasmsDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:20 amClonal Hematopoiesis Predicts Response to\nInterferon-α in Erdheim-Chester Disease and\nMyeloproliferative NeoplasmsJérôme Razanamahery\nDijon University Hospital\, France\n\n\n 11:35 amImpact of Additional Genetic Variants in the\nCourse of Erdheim-Chester Disease… a\nMulticentric Longitudinal Study of 445 French\nPatientsFélicien Triboulet\nPitié-Salpêtrière hospital\, Sorbonne\nUniversity\, Paris\, France\n\n\n 11:50 amGroup Photo\n\n\n 12:00 pmLunch\n\n\n Afternoon Abstract Presentations Session 3: Pixels to Patterns: ECD and Xanthogranuloma\n\n\n 1:00 pmCentral Nervous System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:15 pmMusculoskeletal System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:30 pmPatterns of Presentation and Outcomes in\nAdult XanthogranulomaGuneet Janda\nMayo Clinic\, Rochester\, MN USA\n\n\n 1:45 pmNetworking Break\n\n\n Afternoon Abstract Presentations Session 4: Care in the Real World: Treatment Patterns and Survivorship\n\n\n 2:00 pmReal World Frontline Systemic Anti-Cancer\nTreatment Patterns and Outcomes in\nErdheim–Chester DiseaseCarla Isabel Borre\nMayo Clinic\, Rochester\, MN USA\n\n\n 2:15 pmBurden of Chronic Health Conditions After\nDiagnosis of Erdheim–Chester Disease\n(ECD): Early Results from the Histiocytic\nDisorder Survivor StudyGaurav Goyal\nUniversity of Alabama at\nBirmingham\, Birmingham\, AL USA\n\n\n 2:30 pmDestombes-Rosai-Dorfman Disease:\nClinical\, Molecular Characteristics and\nTreatment Response: data from a\nretrospective cohort of 107 patientsJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 2:45 pmConsiderations for Assessment and\nTreatment of Neuropsychiatric Symptoms in\nECDAnneka Johnston\nRush University Medical Center\,\nChicago IL\n\n\n Poster Presentations and Networking\n\n\n 3:00 pmErdheim-Chester Disease (ECD) is a Rare\nHistiocytic Neoplasm of Non-Langerhans\nCell HistiocytosisAbdalla Bowirrat\nAriel University\, Israel\n\n\n Diagnostic challenges in mixed ErdheimChester Disease and Langerhans Cell\nHistiocytosis in a 54-year-old maleSameer Andani\nMofitt Cancer Center & University\nof South Florida\n\n\n A Mycosis Fungoides-like Drug Reaction\nRapidly Resolving Following Switch from\nBRAF Inhibitor to MEK Inhibitor Monotherapy\nin Erdheim-Chester DiseaseSaipriya Ayyar\nUniversity of Cincinnati/UC Health\,\nCincinnati OH\n\n\n Multimodality Imaging in Erdheim–Chester\nDisease: Radiologic Insights from Pediatric\nand Adult CasesPriyanka Naranje\nAll India Institute of Medical\nSciences\, New Delhi\, India\n\n\n Cardiovascular System Imaging\nAbnormalities in Erdheim-Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n BRAF-Positive Erdheim–Chester Disease with\nProgressive Pulmonary and Vascular\nInvolvement Successfully Treated with\nVemurafenib: A Case ReportHulya Yilmaz Tekinhatun\nDiyarbakir Gazi Yasargil Training and\nResearch Hospital\, Turkey\n\n\n Concurrent Erdheim-Chester Disease and\nClassical Hodgkin Lymphoma with\nunexpected response to lymphoma-directed\ntherapyRebecca Denson\nNew York Presbyterian-Weill Cornell\nMedicine\, New York\, NY\n\n\n Abdominal Imaging Abnormalities in\nErdheim-Chester Disease: A Systematic\nReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n Prevalence and distribution of ErdheimChester Disease in the UK estimated from\nreferral to a National Advisory PanelMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 3:45 pmAll that glitters: retro-orbital\nxanthogranuloma or ECD?Matthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 4:15 pmThe Clue Was the Blood Pressure: Atypical\nErdheim–Chester DiseaseJithma Abeykoon\nMayo Clinic\, Rochester\, MN USA\n\n\n Closing Remarks & Student Abstract Award\n\n\n 4:45 pmECD Global Alliance into the FutureJerome Henson\nExecutive Director\, ECD Global\nAlliance\, DeRidder\, LA USA\n\n\n 4:55 pmJunior Investigator – Best Student\nPresentation AwardOshrat Hershkovitz-Rokah\nAriel University & Assut\n\n\n\n\nDownload de agenda \nRegistreer \nLET OP: Registreer vóór 1 februari om te profiteren van de vroegboekkorting! Bespaar $200 USD en registreer je voor slechts $300 USD! \nMark Heaney Bewustzijnsprijs & prijs voor gemeenschapskampioen\n1 februari 2026 – Laatste dag om je nominatie in te dienen voor de Mark Heaney Awareness Award & Community Champion Award . \n\nStuur uw nominaties in hier.\n\nMark Heaney Bewustzijnsprijs. Nomineer een medische professional die zich inzet om het leven van ECD-patiënten te verbeteren door de ziekte onder de aandacht te brengen binnen de medische wereld. \nPrijs voor gemeenschapskampioen. Nomineer iemand (patiënt\, verzorger\, medisch professional\, vriend\, etc.) die zich vrijwillig heeft ingezet om het leven van iedereen die te maken heeft met ECD te verbeteren. \n\n\n\nMondelinge / Poster Presentatie Abstracts\n1 februari 2026- Inlevering abstracts. \n\nAbstracts voor het Medical Symposium op 1 mei kunnen hier worden ingediend. Gelieve abstracts in te dienen voor mondelinge en/of posterpresentatie. Dit is een geweldige kans om uw werk en het werk van uw collega’s te delen. Laat hen weten dat dit mogelijk is. \n\nReisbeurzen\nReisbijstand – Het Glenn Padnick Memorial Travel Fund We accepteren nu aanvragen voor de ECDGA-conferentie van 2026. \nGlenn Padnick leidde een vol en invloedrijk leven terwijl hij decennialang met de ziekte van Erdheim-Chester (ECD) omging. Van 2011 tot 2022 was hij met niet-aflatende toewijding lid van de raad van bestuur van de ECD Global Alliance\, waarbij hij er altijd voor zorgde dat de stem en behoeften van patiënten centraal bleven staan bij elke beslissing. \nTer ere van Glenn’s nalatenschap van dienstbaarheid en medeleven heeft zijn familie het Glenn Padnick Memorial Travel Fund opgericht. Dit fonds voorziet in financiële steun om patiënten\, zorgverleners en medische professionals te helpen de jaarlijkse ECD-conferentie bij te wonen voor diegenen die anders niet zouden kunnen deelnemen omwille van financiële beperkingen. \nEr kunnen nu aanvragen worden ingediend voor reisondersteuning voor de ECD-conferentie van 2026. De financiering is beperkt en er wordt voorrang gegeven aan personen die het evenement nog nooit hebben bijgewoond. Ons doel is om deze kans met de beschikbare middelen voor zoveel mogelijk leden van de gemeenschap beschikbaar te maken. \nAanvraagdeadline: 1 februari 2026 Kennisgeving van toekenning: Uiterlijk 1 maart 2026 \nVraag hier aan: Glenn Padnick Memorial Reisfonds Aanvraag. \nConferentie Hotel & Reisinformatie\nConferentie Hotel\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nTelefoon: +1 (659) 251-1934 \nEr is een blok kamers gereserveerd in het Hilton Birmingham at UAB voor deelnemers aan de conferentie.\nKamers moeten voor 6 april 2026 gereserveerd zijn om het groepstarief te ontvangen. \nBoek een kamer \nAls u problemen ondervindt bij het boeken van uw kamer\, neem dan contact op met Simon Hill van het Hilton Birmingham Downtown. Zijn nummer is 205-910-1970 en zijn e-mailadres is simon.hill@hiltoncom. \nLuchthavenvervoer\nBirmingham-Shuttlesworth International Airport (BHM)\nGratis pendeldienst is beschikbaar van de luchthaven van Birmingham naar het hotel en wordt rechtstreeks verzorgd door het Hilton Downtown at UAB. \nOm de shuttle te gebruiken: \n\nHaal je bagage op.\nBel het hotel op 205-933-9000 om de shuttle aan te vragen.\nGa naar deur #4L en wacht op de bus met de tekst “Hilton”.\n\nReizen via Atlanta\nHartsfield-Jackson Atlanta International Airport (ATL) ligt op ongeveer 3 uur van Birmingham en biedt rechtstreekse internationale vluchten naar de meeste landen. Er zijn pendeldiensten beschikbaar tussen het vliegveld van Atlanta en Birmingham voor reizigers die via ATL arriveren. \nLink pendeldienst \nContact:\nErdheim-Chester Disease Global Alliance\nE-mail: support@erdheim-chester.org \nRegistreer \nOnze sponsors\n  URL:https://www.erdheim-chester.org/event/11e-jaarlijkse-ecd-medisch-symposium-birmingham-2026/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, 35205\, United States CATEGORIES:Aanbevolen,ECD Medisch Symposium ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Medical-Symposium-hd-v2.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260430 DTEND;VALUE=DATE:20260503 DTSTAMP:20260410T171729Z CREATED:20250924T153146Z LAST-MODIFIED:20260410T171729Z UID:10000874-1777507200-1777766399@www.erdheim-chester.org SUMMARY:Det 11. årlige medisinske ECD-symposiet - Birmingham 2026 DESCRIPTION:Erdheim-Chester Disease Global Alliance kunngjør medisinsk symposium 2026 \nBirmingham\, AL – The Erdheim-Chester Disease Global Alliance (ECDGA) og UAB School of Medicine inviterer helsepersonell og forskere. \n\nMedisinsk symposium: 30. april-2. mai 2026\n\nTorsdag 30. april 2026\nPasient- og pårørendesamling: 08:00–16:30\nSted: Marnix E. Heersink Conference Center ved University of Alabama at Birmingham\nFestmiddag: 18:00–20:00\nSted: Hilton at UAB Downtown \nFredag 1. mai 2026\nMedisinsk symposium: 08:00–17:00\nSted: Marnix E. Heersink Conference Center ved University of Alabama at Birmingham\nMedisinsk mottakelse for symposium: 18:00–20:00\nSted: Marnix E. Heersink Conference Center ved University of Alabama at Birmingham \nLørdag 2. mai 2026\nMøte for ECD-behandlingssentre: 08:00–11:00\nSted: UAB Cancer Center \nDette arrangementet vil samle det globale Erdheim-Chester-samfunnet med ledende medisinske eksperter for å dele den nyeste forskningen\, klinisk innsikt og samfunnsressurser. Deltakerne kan forvente seg lærerike sesjoner\, muligheter til å komme i kontakt med fagfeller og oppdateringer om nye behandlingsformer og pasientbehandling. \nYtterligere detaljer om hotellet og høydepunktene i programmet vil bli offentliggjort i løpet av de kommende månedene. \nDagsorden\n\n\n\n\n TimeSubjectPresenter\n\n\n\n\n 8:00 amRegistration & light breakfast\n\n\n 8:30 amWelcome to Birmingham and the 11th Annual Erdheim-Chester Disease International ConferenceGaurav Goyal\nUniversity of Alabama at Birmingham\, Birmingham\, AL USA\n\n\n Keynote Address\n\n\n 8:45 am Diversity and Degeneration in\nNeurohistiocytic DiseaseNicole Coufal\nUniversity of California\, San Diego\nUSA\n\n\n 9:25 amBreak\n\n\n Morning Abstract Presentations Session 1: Cells\, Clones & Circuits: Where Histiocytosis Begins (and Persists)\n\n\n 9:35 amARAF Mutations Drive Histiocytic Neoplasms\nIn Vivo and Provide Insights into Cellular\nOriginBenjamin Durham\nRutgers Cancer Institute\, Robert\nWood Johnson School of Medicine\,\nBrunswick\, NJ\n\n\n 9:50 amTracking BRAF V600E Persistence under MEK\nInhibition in Histiocytoses: a B-cell–enriched\nsignalJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 10:05 amDistribution of MAP2K1 Variants Across\nPeripheral Blood Cells in Erdheim-Chester\nDisease and Other HistiocytosesIrena Ungureanu\nAmbroise-Paré Hospital\, Pathology\nDepartment\, Boulogne-Billancourt\,\nFrance\n\n\n 10:20 amThe Clonal Origin and Evolution of High-Risk\nMultisystem Histiocytosis in AdultsMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n 10:35 amNetworking Break\n\n\n Morning Abstract Presentations Session 2: Genotype → Therapy: Biomarkers\, Responses\, and New Vulnerabilities\n\n\n 10:50 amKRAS Mutations in Histiocytic Neoplasms:\nMutation Spectrum and Response to MEK\nInhibitionDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:05 amCyclin D1 Overexpression Drives Replication\nStress and Creates Therapeutic\nVulnerabilities in Histiocytic NeoplasmsDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:20 amClonal Hematopoiesis Predicts Response to\nInterferon-α in Erdheim-Chester Disease and\nMyeloproliferative NeoplasmsJérôme Razanamahery\nDijon University Hospital\, France\n\n\n 11:35 amImpact of Additional Genetic Variants in the\nCourse of Erdheim-Chester Disease… a\nMulticentric Longitudinal Study of 445 French\nPatientsFélicien Triboulet\nPitié-Salpêtrière hospital\, Sorbonne\nUniversity\, Paris\, France\n\n\n 11:50 amGroup Photo\n\n\n 12:00 pmLunch\n\n\n Afternoon Abstract Presentations Session 3: Pixels to Patterns: ECD and Xanthogranuloma\n\n\n 1:00 pmCentral Nervous System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:15 pmMusculoskeletal System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:30 pmPatterns of Presentation and Outcomes in\nAdult XanthogranulomaGuneet Janda\nMayo Clinic\, Rochester\, MN USA\n\n\n 1:45 pmNetworking Break\n\n\n Afternoon Abstract Presentations Session 4: Care in the Real World: Treatment Patterns and Survivorship\n\n\n 2:00 pmReal World Frontline Systemic Anti-Cancer\nTreatment Patterns and Outcomes in\nErdheim–Chester DiseaseCarla Isabel Borre\nMayo Clinic\, Rochester\, MN USA\n\n\n 2:15 pmBurden of Chronic Health Conditions After\nDiagnosis of Erdheim–Chester Disease\n(ECD): Early Results from the Histiocytic\nDisorder Survivor StudyGaurav Goyal\nUniversity of Alabama at\nBirmingham\, Birmingham\, AL USA\n\n\n 2:30 pmDestombes-Rosai-Dorfman Disease:\nClinical\, Molecular Characteristics and\nTreatment Response: data from a\nretrospective cohort of 107 patientsJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 2:45 pmConsiderations for Assessment and\nTreatment of Neuropsychiatric Symptoms in\nECDAnneka Johnston\nRush University Medical Center\,\nChicago IL\n\n\n Poster Presentations and Networking\n\n\n 3:00 pmErdheim-Chester Disease (ECD) is a Rare\nHistiocytic Neoplasm of Non-Langerhans\nCell HistiocytosisAbdalla Bowirrat\nAriel University\, Israel\n\n\n Diagnostic challenges in mixed ErdheimChester Disease and Langerhans Cell\nHistiocytosis in a 54-year-old maleSameer Andani\nMofitt Cancer Center & University\nof South Florida\n\n\n A Mycosis Fungoides-like Drug Reaction\nRapidly Resolving Following Switch from\nBRAF Inhibitor to MEK Inhibitor Monotherapy\nin Erdheim-Chester DiseaseSaipriya Ayyar\nUniversity of Cincinnati/UC Health\,\nCincinnati OH\n\n\n Multimodality Imaging in Erdheim–Chester\nDisease: Radiologic Insights from Pediatric\nand Adult CasesPriyanka Naranje\nAll India Institute of Medical\nSciences\, New Delhi\, India\n\n\n Cardiovascular System Imaging\nAbnormalities in Erdheim-Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n BRAF-Positive Erdheim–Chester Disease with\nProgressive Pulmonary and Vascular\nInvolvement Successfully Treated with\nVemurafenib: A Case ReportHulya Yilmaz Tekinhatun\nDiyarbakir Gazi Yasargil Training and\nResearch Hospital\, Turkey\n\n\n Concurrent Erdheim-Chester Disease and\nClassical Hodgkin Lymphoma with\nunexpected response to lymphoma-directed\ntherapyRebecca Denson\nNew York Presbyterian-Weill Cornell\nMedicine\, New York\, NY\n\n\n Abdominal Imaging Abnormalities in\nErdheim-Chester Disease: A Systematic\nReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n Prevalence and distribution of ErdheimChester Disease in the UK estimated from\nreferral to a National Advisory PanelMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 3:45 pmAll that glitters: retro-orbital\nxanthogranuloma or ECD?Matthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 4:15 pmThe Clue Was the Blood Pressure: Atypical\nErdheim–Chester DiseaseJithma Abeykoon\nMayo Clinic\, Rochester\, MN USA\n\n\n Closing Remarks & Student Abstract Award\n\n\n 4:45 pmECD Global Alliance into the FutureJerome Henson\nExecutive Director\, ECD Global\nAlliance\, DeRidder\, LA USA\n\n\n 4:55 pmJunior Investigator – Best Student\nPresentation AwardOshrat Hershkovitz-Rokah\nAriel University & Assut\n\n\n\n\nLast ned agenda \nRegistrer deg \nMERK: Registrer deg før 1. februar for å dra nytte av tidligregistreringskostnaden! Spar 200 USD og registrer deg for bare 300 USD! \nMark Heaney Awareness Award & Community Champion Award\n1. februar 2026 – siste dag for å sende inn nominasjon til Mark Heaney Awareness Award & Community Champion Award . \n\nVennligst send inn dine nominasjoner her.\n\nMark Heaney Awareness Award. Nominer en medisinsk fagperson som arbeider for å forbedre livene til ECD-pasienter ved å øke bevisstheten om sykdommen innen legestanden. \nCommunity Champion Award. Nominer en person (pasient\, omsorgsperson\, helsepersonell\, venn osv.) som har gitt av sin tid for å bidra til å forbedre livet til alle dem som er berørt av ECD. \n\n\n\nSammendrag av muntlige presentasjoner/plakatpresentasjoner\n1. februar 2026 – Frist for innsending av sammendrag. \n\nHer kan du sende inn abstrakter til det medisinske symposiet 1. mai. Send inn abstrakter for muntlig presentasjon og/eller posterpresentasjon. Dette er en flott mulighet til å dele ditt og dine kollegers arbeid. Vennligst informer dem om muligheten. \n\nReisestipendier\nReisestøtte – The Glenn Padnick Memorial Travel Fund tar nå imot søknader til ECDGA-konferansen 2026. \nGlenn Padnick levde et innholdsrikt og innflytelsesrikt liv mens han i flere tiår navigerte i Erdheim-Chester Disease (ECD). Fra 2011 til 2022 satt han med urokkelig engasjement i styret for ECD Global Alliance\, og han sørget alltid for at pasientenes stemmer og behov ble satt i sentrum for alle beslutninger. \nFor å hedre Glenns arv av service og medfølelse har familien hans generøst opprettet Glenn Padnick Memorial Travel Fund. Dette fondet gir økonomisk støtte til pasienter\, omsorgspersoner og helsepersonell som deltar på den årlige ECD-konferansen\, for dem som ellers ikke ville hatt mulighet til å delta på grunn av økonomiske begrensninger. \nDet er nå mulig å søke om reisestøtte til ECD-konferansen 2026. Det er begrenset med midler\, og personer som aldri har deltatt på konferansen før\, vil bli prioritert. Målet vårt er å gjøre denne muligheten tilgjengelig for så mange som mulig i lokalsamfunnet med de ressursene vi har til rådighet. \nSøknadsfrist: 1. februar 2026 Melding om tildeling: Senest 1. mars 2026 \nSøk her: Glenn Padnick Memorial Travel Fund Request. \nHotell- og reiseinformasjon for konferansen\nKonferansehotell\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nTelefon: +1 (659) 251-1934 \nDet er reservert en rekke rom på Hilton Birmingham at UAB for konferansedeltakerne.\nRommene må reserveres innen 6. april 2026 for å få gruppeprisen. \nBestill et rom \nHvis du har problemer med å bestille rommet ditt\, vennligst kontakt Simon Hill på Hilton Birmingham Downtown. Hans nummer er 205-910-1970 og hans e-post er simon.hill@hiltoncom. \nTransport til flyplassen\nBirmingham-Shuttlesworth International Airport (BHM)\nGratis transport fra Birmingham flyplass til hotellet tilbys direkte av Hilton Downtown at UAB. \nFor å bruke skyttelbussen: \n\nHent bagasjen din.\nRing hotellet på 205-933-9000 for å bestille skyttelbuss.\nGå til dør nr. 4L\, og vent på bussen merket “Hilton”.\n\nReiser via Atlanta\nHartsfield-Jackson Atlanta internasjonale lufthavn (ATL) ligger ca. 3 timer fra Birmingham\, og tilbyr internasjonale direkteflyvninger til de fleste land. Det tilbys skytteltransport mellom Atlanta lufthavn og Birmingham for reisende som ankommer via ATL. \nLenke til skytteltjeneste \nKontakt:\nErdheim-Chester Disease Global Alliance\nE-post: support@erdheim-chester.org \nRegistrer deg \nVåre sponsorer\n  URL:https://www.erdheim-chester.org/event/det-11-arlige-medisinske-ecd-symposiet-birmingham-2026/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, 35205\, United States CATEGORIES:ECD Medisinsk symposium,Utvalgt ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Medical-Symposium-hd-v2.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260430 DTEND;VALUE=DATE:20260503 DTSTAMP:20260410T171932Z CREATED:20250924T153146Z LAST-MODIFIED:20260410T171932Z UID:10000882-1777507200-1777766399@www.erdheim-chester.org SUMMARY:第 11 屆年度 ECD 醫學研討會 - 伯明翰 2026 DESCRIPTION:埃爾德海姆-切斯特病全球聯盟宣布 2026 年醫學研討會 \n阿拉巴馬州伯明翰 — 埃德海姆-切斯特病全球聯盟 （ECDGA） 和 UAB 醫學院邀請醫療保健專業人員和研究人員。 \n\n醫學研討會：2026 年 4 月 30 日至 5 月 2 日\n\n2026 年 4 月 30 日（星期四）\n病友與家屬聚會：上午 8:00 – 下午 4:30\n地點：阿拉巴馬大學伯明翰分校 Marnix E. Heersink 會議中心\n慶祝晚宴：下午 6:00 – 晚上 8:00\n地點：Hilton at UAB Downtown \n2026 年 5 月 1 日，星期五\n醫學研討會：上午 8:00 – 下午 5:00\n地點：阿拉巴馬大學伯明翰分校 Marnix E. Heersink 會議中心\n醫學研討會招待晚會：下午 6:00 – 晚上 8:00\n地點：阿拉巴馬大學伯明翰分校 Marnix E. Heersink 會議中心 \n2026 年 5 月 2 日，星期六\nECD 照護中心會議：上午 8:00 – 上午 11:00\n地點：UAB 癌症中心 \n本次活動將匯集全球埃爾德海姆-切斯特病界與領先的醫學專家，分享最新研究、臨床見解和社區資源。 與會者可以期待教育課程、與同行聯繫的機會以及新興治療和患者護理的最新信息。 \n有關酒店和節目亮點的更多詳細信息將在未來幾個月內發布。 \n議程\n\n\n\n\n TimeSubjectPresenter\n\n\n\n\n 8:00 amRegistration & light breakfast\n\n\n 8:30 amWelcome to Birmingham and the 11th Annual Erdheim-Chester Disease International ConferenceGaurav Goyal\nUniversity of Alabama at Birmingham\, Birmingham\, AL USA\n\n\n Keynote Address\n\n\n 8:45 am Diversity and Degeneration in\nNeurohistiocytic DiseaseNicole Coufal\nUniversity of California\, San Diego\nUSA\n\n\n 9:25 amBreak\n\n\n Morning Abstract Presentations Session 1: Cells\, Clones & Circuits: Where Histiocytosis Begins (and Persists)\n\n\n 9:35 amARAF Mutations Drive Histiocytic Neoplasms\nIn Vivo and Provide Insights into Cellular\nOriginBenjamin Durham\nRutgers Cancer Institute\, Robert\nWood Johnson School of Medicine\,\nBrunswick\, NJ\n\n\n 9:50 amTracking BRAF V600E Persistence under MEK\nInhibition in Histiocytoses: a B-cell–enriched\nsignalJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 10:05 amDistribution of MAP2K1 Variants Across\nPeripheral Blood Cells in Erdheim-Chester\nDisease and Other HistiocytosesIrena Ungureanu\nAmbroise-Paré Hospital\, Pathology\nDepartment\, Boulogne-Billancourt\,\nFrance\n\n\n 10:20 amThe Clonal Origin and Evolution of High-Risk\nMultisystem Histiocytosis in AdultsMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n 10:35 amNetworking Break\n\n\n Morning Abstract Presentations Session 2: Genotype → Therapy: Biomarkers\, Responses\, and New Vulnerabilities\n\n\n 10:50 amKRAS Mutations in Histiocytic Neoplasms:\nMutation Spectrum and Response to MEK\nInhibitionDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:05 amCyclin D1 Overexpression Drives Replication\nStress and Creates Therapeutic\nVulnerabilities in Histiocytic NeoplasmsDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:20 amClonal Hematopoiesis Predicts Response to\nInterferon-α in Erdheim-Chester Disease and\nMyeloproliferative NeoplasmsJérôme Razanamahery\nDijon University Hospital\, France\n\n\n 11:35 amImpact of Additional Genetic Variants in the\nCourse of Erdheim-Chester Disease… a\nMulticentric Longitudinal Study of 445 French\nPatientsFélicien Triboulet\nPitié-Salpêtrière hospital\, Sorbonne\nUniversity\, Paris\, France\n\n\n 11:50 amGroup Photo\n\n\n 12:00 pmLunch\n\n\n Afternoon Abstract Presentations Session 3: Pixels to Patterns: ECD and Xanthogranuloma\n\n\n 1:00 pmCentral Nervous System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:15 pmMusculoskeletal System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:30 pmPatterns of Presentation and Outcomes in\nAdult XanthogranulomaGuneet Janda\nMayo Clinic\, Rochester\, MN USA\n\n\n 1:45 pmNetworking Break\n\n\n Afternoon Abstract Presentations Session 4: Care in the Real World: Treatment Patterns and Survivorship\n\n\n 2:00 pmReal World Frontline Systemic Anti-Cancer\nTreatment Patterns and Outcomes in\nErdheim–Chester DiseaseCarla Isabel Borre\nMayo Clinic\, Rochester\, MN USA\n\n\n 2:15 pmBurden of Chronic Health Conditions After\nDiagnosis of Erdheim–Chester Disease\n(ECD): Early Results from the Histiocytic\nDisorder Survivor StudyGaurav Goyal\nUniversity of Alabama at\nBirmingham\, Birmingham\, AL USA\n\n\n 2:30 pmDestombes-Rosai-Dorfman Disease:\nClinical\, Molecular Characteristics and\nTreatment Response: data from a\nretrospective cohort of 107 patientsJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 2:45 pmConsiderations for Assessment and\nTreatment of Neuropsychiatric Symptoms in\nECDAnneka Johnston\nRush University Medical Center\,\nChicago IL\n\n\n Poster Presentations and Networking\n\n\n 3:00 pmErdheim-Chester Disease (ECD) is a Rare\nHistiocytic Neoplasm of Non-Langerhans\nCell HistiocytosisAbdalla Bowirrat\nAriel University\, Israel\n\n\n Diagnostic challenges in mixed ErdheimChester Disease and Langerhans Cell\nHistiocytosis in a 54-year-old maleSameer Andani\nMofitt Cancer Center & University\nof South Florida\n\n\n A Mycosis Fungoides-like Drug Reaction\nRapidly Resolving Following Switch from\nBRAF Inhibitor to MEK Inhibitor Monotherapy\nin Erdheim-Chester DiseaseSaipriya Ayyar\nUniversity of Cincinnati/UC Health\,\nCincinnati OH\n\n\n Multimodality Imaging in Erdheim–Chester\nDisease: Radiologic Insights from Pediatric\nand Adult CasesPriyanka Naranje\nAll India Institute of Medical\nSciences\, New Delhi\, India\n\n\n Cardiovascular System Imaging\nAbnormalities in Erdheim-Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n BRAF-Positive Erdheim–Chester Disease with\nProgressive Pulmonary and Vascular\nInvolvement Successfully Treated with\nVemurafenib: A Case ReportHulya Yilmaz Tekinhatun\nDiyarbakir Gazi Yasargil Training and\nResearch Hospital\, Turkey\n\n\n Concurrent Erdheim-Chester Disease and\nClassical Hodgkin Lymphoma with\nunexpected response to lymphoma-directed\ntherapyRebecca Denson\nNew York Presbyterian-Weill Cornell\nMedicine\, New York\, NY\n\n\n Abdominal Imaging Abnormalities in\nErdheim-Chester Disease: A Systematic\nReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n Prevalence and distribution of ErdheimChester Disease in the UK estimated from\nreferral to a National Advisory PanelMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 3:45 pmAll that glitters: retro-orbital\nxanthogranuloma or ECD?Matthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 4:15 pmThe Clue Was the Blood Pressure: Atypical\nErdheim–Chester DiseaseJithma Abeykoon\nMayo Clinic\, Rochester\, MN USA\n\n\n Closing Remarks & Student Abstract Award\n\n\n 4:45 pmECD Global Alliance into the FutureJerome Henson\nExecutive Director\, ECD Global\nAlliance\, DeRidder\, LA USA\n\n\n 4:55 pmJunior Investigator – Best Student\nPresentation AwardOshrat Hershkovitz-Rokah\nAriel University & Assut\n\n\n\n\n下載議程 \n登記 \n便條： 2月1日前報名，享受早鳥報名費用！節省 200 美元，註冊僅需 300 美元！ \n馬克·希尼意識獎和社區冠軍獎\n2026 年 2 月 1 日 – 提交馬克·希尼意識獎和社區冠軍獎提名的最後一天。 \n\n請提交您的提名 這裡。\n\n馬克·希尼意識獎。提名一名致力於通過提高醫學界對該疾病的認識來改善 ECD 患者生活的醫療專業人員。 \n社區冠軍獎。提名任何自願花時間幫助改善所有受 ECD 影響的人的生活的人（患者、護理人員、醫療專業人員、朋友等）。 \n\n\n\n口頭/海報摘要\n2026 年 2 月 1 日 – 摘要截止日期。 \n\n5 月 1 日醫學研討會的摘要提交，可在 此處 接受 請提交摘要以進行口頭和/或海報展示。這是分享您和同事工作的絕佳機會。請讓他們知道這個機會。 \n\n旅遊獎學金\n旅行援助 – 格倫·帕德尼克紀念旅行基金現已接受 2026 年 ECDGA 會議的申請。 \n格倫·帕德尼克 （Glenn Padnick） 在與埃德海姆-切斯特病 （ECD） 抗爭數十年的同時，過著充實而有影響力的生活。從 2011 年到 2022 年，他在 ECD 全球聯盟董事會中堅定不移地奉獻精神，始終確保患者的聲音和需求仍然是每個決策的核心。 \n為了紀念格倫的服務和同情心遺產，他的家人慷慨地設立了格倫·帕德尼克紀念旅行基金。該基金提供經濟援助，幫助患者、護理人員和醫療專業人員參加年度 ECD 會議，幫助那些因經濟拮据而無法參加的人。 \n2026 年 ECD 會議的旅行援助申請現已開放。資金有限，將優先考慮以前從未參加過該活動的個人。我們的目標是利用可用資源為盡可能多的社區成員提供這個機會。 \n截止報名日期： 2026 年 2 月 1 日獲獎通知：不遲於 2026 年 3 月 1 日 \n在這裡申請：格倫·帕德尼克紀念旅行基金請求。 \n會議飯店與旅遊資訊\n會議飯店\n伯明罕希爾頓飯店\n808 20th Street South\nBirmingham， AL 35205\n電話：+ 1 （659） 251-1934 \nUAB伯明罕希爾頓飯店已預訂一棟房間供會議參加者使用。\n房間必須於2026年4月6日前預訂，才能領取團體票價。 \n預訂客房 \n如果您在預訂客房時遇到任何問題，請聯繫伯明翰市中心希爾頓酒店的 Simon Hill。他的電話號碼是 205-910-1970，電子郵件為 simon.hill@hiltoncom。 \n機場交通\n伯明罕-沙特爾斯沃思國際機場（BHM）\n伯明罕機場至飯店提供免費接駁服務，由UAB的希爾頓市中心直接提供。 \n使用接駁車： \n\n收拾行李。\n請致電飯店 205-933-9000 申請接駁車服務。\n前往門 #4L，等待標示為「希爾頓」的公車。\n\n經由亞特蘭大旅行\n哈茲菲爾德-傑克森亞特蘭大國際機場（ATL）距離伯明罕約3小時車程，提供直飛多數國家的國際航班。亞特蘭大機場與伯明罕之間有接駁服務，方便經由亞特蘭大抵達的旅客使用。 \n接駁服務連結 \n㨟：\n埃德海姆-切斯特病全球聯盟\n電子郵件： support@erdheim-chester.org \n登記 \n我們的贊助商\n  URL:https://www.erdheim-chester.org/event/%e7%ac%ac-11-%e5%b1%86%e5%b9%b4%e5%ba%a6-ecd-%e9%86%ab%e5%ad%b8%e7%a0%94%e8%a8%8e%e6%9c%83-%e4%bc%af%e6%98%8e%e7%bf%b0-2026/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, 35205\, United States CATEGORIES:ECD 醫學研討會,特色 ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Medical-Symposium-hd-v2.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260429 DTEND;VALUE=DATE:20260501 DTSTAMP:20260410T171905Z CREATED:20251030T142537Z LAST-MODIFIED:20260410T171905Z UID:10000955-1777420800-1777593599@www.erdheim-chester.org SUMMARY:11th Annual ECD Patient & Family Gathering - Birmingham 2026 DESCRIPTION:Erdheim-Chester Disease Global Alliance Announces 2026 Patient & Family Gathering. \nBirmingham\, AL — The Erdheim-Chester Disease Global Alliance (ECDGA) and UAB School of Medicine invites patients\, families\, healthcare professionals\, and researchers to save the date. \n\nPatient & Family Gathering (PFG): April 29–30\, 2026\n\nWednesday\, April 29\, 2026\nMeet and Greet: 3:00 pm-5:00 pm\nLocation: Hilton at UAB Downtown \nThursday\, April 30\, 2026\nPatient & Family Gathering: 8:00 am-4:30 pm\nLocation: Marnix E. Heersink Conference Center at the University of Alabama at Birmingham \nCelebration Dinner: 6:00 pm-8:00 pm\nLocation: Hilton at UAB Downtown \nThis event will bring together the global Erdheim-Chester disease community with leading medical experts to share the latest research\, clinical insights\, and community resources. Attendees can expect educational sessions\, opportunities to connect with peers\, and updates on emerging treatments and patient care. \nFurther details on the hotel and program highlights will be released in the coming months. \nAgenda\n\n\n\n\n TimeAllocated minutes (510 min total)Presentation Subject Possibilities (Actual Titles to be Provided by Presenters)PresenterSession Description\n\n\n\n\n 8:00 AM30Registration & Light Breakfast\n\n\n 8:30 AM15Welcome to Birmingham & PFG MeetingGaurav Goyal\, MDWelcome to the 11th Annual Erdheim-Chester Disease International Conference! Introductions to Birmingham\, UAB and the ECD Global Alliance.\n\n\n 8:45 AM15Manifestations of histiocytosis in adultsMatthew Collin\, MD\, PhDLearn about the difference types of adult histiocytic disorders. How are they different? How are they the same? What have we learned recently that makes us believe they are more alike than they once were.\n\n\n 9:00 AM15Histiocytosis at the Cellular LevelAstrid van Halteren\, PhDThis presentation will zoom into the different cell types which can be found in the bone marrow\, blood and tissues of patients diagnosed with histiocytosis\n\n\n 9:15 AM15ECD/Histio Treatment OptionsSam Reynolds\, MDECD/Histio Treatment Options (Current & on the horizon)\n\n\n 9:30 AM15Tagreted Therapy: The Good\, the Bad\, and the UnaffordableDaniel Sokolowski\, PharmDOverview of targeted treatments for histiocytosis and management of their adverse effects.\n\n\n 9:45 AM20BreakN/A\n\n\n 10:05 AM15Advancing treatment for histiocytic neurodegeneration through patient specific modelingNicole Coufal\, MD\, PhDThe importance of patient samples to the science\, and the importance of pilot funding and where we hope to take it in the future.\n\n\n 10:20 AM15What should I know about ECD Treatment and My Heart? Potential cardiac side effects of ECD treatment.Carrie Lenneman\, MD\, MSCIDiscuss common medication used in treatment of ECD . Review  potential cardiac side effects and management strategies of ECD treatment.\n\n\n 10:35 AM15ECD on the BrainEli Diamond\, MDDiscussion of ECD effects on the brain.\n\n\n 10:50 AM15Endocrine Manifestations of Erdheim-Chester DiseaseAlexandra Dodd\, MDUnderstand endocrine manifestations of ECD including effects on the pituitary gland. Understand the treatments for endocrine disorders related to ECD.\n\n\n 11:05 AM40Expert Q&AJulien Haroche\, MD\, PhD\nEli Diamond\, MD\nRonald Go\, MD\nGaurav Goyal\, MD (Moderator)Ask your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research.\n\n\n 11:45 AM15PicturesN/A\n\n\n 12:00 – 1:00pm60LunchN/A\n\n\n 1:00 PM20Research Opportunities (Panel Discussion - 5 min each)Eli Diamond\, MD (Registry)\nGaurav Goyal\, MD (Survivorship)\nJithma Abeykoon\, MD (CSF1R\, ERK)\nMatthew Collins\, MD\, PhDHear the answers from ECD Medical experts about the open research opportunities. Hear up-to-date answers from those who are doing ECD research.\n\n\n 1:20 PM20Expert Question & Answer PanelGaurav Goyal\, MD\nEli Diamond\, MD\nJithme Abeykoon\, MD\nMatthew Collins\, MD\, PhDAsk your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research. Don’t be shy\, ask your questions about ECD in general! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n 1:40 PM60Breakout SessionsKevin O'Brien\, RN\, MS-CRNP (patients) \n\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM (Caregivers)Breakout Session:\n\n- Patients: Personal Challenges in Living with Erdheim-Chester Disease\n\n- Cargivers & Family: Addressing YOUR Emotional Needs\n\n\n 2:40 PM20BreakN/A\n\n\n 3:00 PM15General medical management for ECDKevin O'Brien\, RN\, MS-CRNPHighlighting the importance of managing ongoing general medical problems. For example\, hypertension\, diabetes\, weight\, cholesterol levels\, etc. These uncontrolled medical problems can compound overall disease burden.\n\n\n 3:15 PM15Emotional and Cognitive Changes in ECDSylvia Huang\, PhD\, MA\, MEd\, FAAHPMLiving with Erdheim-Chester Disease can bring emotional\, cognitive\, and fatigue-related changes that are real and often invisible. This session offers understanding\, reassurance\, and practical guidance to help patients and families make sense of these experiences. Participants will learn about supportive strategies and resources that promote resilience\, wellbeing\, and hope.\n\n\n 3:30 PM15Fatigue and Pain in Erdheim-Chester Disease: Root Causes and Practical Strategies for Energy\, Relief\, and ResilienceRichard Taylor\, PhD\, DNP\, CRNP\, APN-BCThis session is designed to empower patients and caregivers by unpacking the root causes of fatigue and pain in Erdheim-Chester Disease (ECD).\n\nThe goal is to offer meaningful\, evidence-informed tools to reduce suffering\, build resilience\, and improve energy\, mobility\, and quality of life.\n\n\n 3:45 PM15Movement is MedicineElizabeth Bohorfoush\, DPTPatients and caregivers receive guidance through gentle\, low-level exercises to help reduce pain\, build strength\, improve posture\, and encourage activity.\n\n\n 4:00 PM20Expert Question & Answer PanelKevin O'Brien\, RN\, MS-CRNP\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM\nRichard Taylor\, PhD\, DNP\, CRNP\, APN-BC\nElizabeth Bohorfoush\, DPTAsk your questions and hear the answers from the experts. Don’t be shy\, ask your questions! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n 4:20 PM10ECDGA CloseJerome Henson\, ED (ECDGA)Learn more about the ECD Global Alliance. Hear why the organization was created and what has been accomplished as a result. Learn how the organization is able to do its work and how you can become more involved in improving the lives of all who have been impacted by Erdheim-Chester Disease.\n\n\n 510\n\n\n\n\nDownload Agenda \nRegister \nNOTE: Register before February 1st to take advantage of the early bird registration cost! Save $100 USD and register for only $100 USD! \nMark Heaney Awareness Award & Community Champion Award\nFebruary 1st\, 2026 – Last day to submit your nomination for the Mark Heaney Awareness Award & Community Champion Award. \n\nPlease submit your nominations here.\n\nMark Heaney Awareness Award.  Nominate a medical professional who is working to improve the lives of ECD patients by bringing awareness to the disease within the medical profession.\nCommunity Champion Award.  Nominate anyone (patient\, caregiver\, medical professional\, friend\, etc.) who has volunteered their time to help improve the lives of all of those impacted by ECD.\n\n\n\nContact:\nErdheim-Chester Disease Global Alliance\nEmail: support@erdheim-chester.org \nPatient Poster – Submissions\nFebruary 1\, 2026\, is the last day to complete a Patient Poster for display at the Patient & Family Gathering. Please submit your poster information here! \nTravel Scholarships\nTravel Assistance – The Glenn Padnick Memorial Travel Fund Now accepting applications for the 2026 ECDGA Conference. \nGlenn Padnick lived a full and impactful life while navigating Erdheim-Chester Disease (ECD) for decades. From 2011 to 2022\, he served with unwavering dedication on the ECD Global Alliance Board of Directors\, always ensuring that the voices and needs of patients remained central to every decision. \nIn honor of Glenn’s legacy of service and compassion\, his family generously established the Glenn Padnick Memorial Travel Fund. This fund provides financial assistance to help patients\, caregivers\, and medical professionals attend the annual ECD conference for those who may not otherwise be able to participate due to financial constraints. \nApplications are now open for travel assistance for the 2026 ECD Conference. Funding is limited\, and priority will be given to individuals who have never attended the event before. Our goal is to make this opportunity available to as many community members as possible with the resources available. \nApplication Deadline: February 1\, 2026 Award Notifications: No later than March 1\, 2026 \nApply Here: Glenn Padnick Memorial Travel Fund Request. \nConference Hotel & Travel Information\nConference Hotel\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nPhone: +1 (659) 251-1934 \nA block of rooms has been reserved at the Hilton Birmingham at UAB for conference attendees.\nRooms must be reserved by April 6\, 2026\, to receive the group rate. \nBook a Room \nIf you have any issues with booking your room\, please contact  Simon Hill at the Hilton Birmingham Downtown.  His number is 205-910-1970 and his email is simon.hill@hiltoncom. \nAirport Transportation\nBirmingham–Shuttlesworth International Airport (BHM)\nComplimentary shuttle service is available from the Birmingham airport to the hotel and is provided directly by the Hilton Downtown at UAB. \nTo use the shuttle:  \n\nCollect your luggage.\nCall the hotel at 205-933-9000 to request the shuttle.\nProceed to Door #4L and wait for the bus marked “Hilton.”\n\nTraveling via Atlanta\nHartsfield–Jackson Atlanta International Airport (ATL) is approximately 3 hours from Birmingham and offers direct international flights to most countries. Shuttle services are available between the Atlanta airport and Birmingham for travelers arriving through ATL. \nShuttle Service Link \nRegister \nOur Sponsors\nThis meeting is made possible by our sponsor\, Father Charles Balnaves of Melbourne\, Australia\, who supports this event in memory of his late wife\, Tanya. We are grateful for Father Charles’ continued\, generous sponsorship. We also appreciate the support of ARUP Laboratories.\n  URL:https://www.erdheim-chester.org/event/11th-annual-ecd-patient-family-gathering-birmingham-2026/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, AL\, 35205\, United States CATEGORIES:ECD Patient & Family Gathering,Featured ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Patient-Family-Gathering-hd-v2.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260429 DTEND;VALUE=DATE:20260501 DTSTAMP:20260410T173703Z CREATED:20251030T142537Z LAST-MODIFIED:20260410T173703Z UID:10000963-1777420800-1777593599@www.erdheim-chester.org SUMMARY:11. årlige ECD-samling for pasienter og pårørende - Birmingham 2026 DESCRIPTION:Erdheim-Chester Disease Global Alliance kunngjør pasient- og familiesamling 2026. \nBirmingham\, AL – Erdheim-Chester Disease Global Alliance (ECDGA) og UAB School of Medicine inviterer pasienter\, familier\, helsepersonell og forskere til å holde av datoen. \n\nPasient- og familiesamling (PFG): 29.-30. april 2026\n\nOnsdag 29. april 2026\nUformelt møte: kl. 15.00–17.00\nSted: Hilton at UAB Downtown \nTorsdag 30. april 2026\nPasient- og pårørendesamling: kl. 08.00–16.30\nSted: Marnix E. Heersink Conference Center ved University of Alabama i Birmingham \nFestmiddag: kl. 18.00–20.00\nSted: Hilton at UAB Downtown \nDette arrangementet vil samle det globale Erdheim-Chester-samfunnet med ledende medisinske eksperter for å dele den nyeste forskningen\, klinisk innsikt og samfunnsressurser. Deltakerne kan forvente seg lærerike sesjoner\, muligheter til å komme i kontakt med fagfeller og oppdateringer om nye behandlingsformer og pasientbehandling. \nYtterligere detaljer om hotellet og høydepunktene i programmet vil bli offentliggjort i løpet av de kommende månedene. \nDagsorden\n\n\n\n\n TimeAllocated minutes (510 min total)Presentation Subject Possibilities (Actual Titles to be Provided by Presenters)PresenterSession Description\n\n\n\n\n 8:00 AM30Registration & Light Breakfast\n\n\n 8:30 AM15Welcome to Birmingham & PFG MeetingGaurav Goyal\, MDWelcome to the 11th Annual Erdheim-Chester Disease International Conference! Introductions to Birmingham\, UAB and the ECD Global Alliance.\n\n\n 8:45 AM15Manifestations of histiocytosis in adultsMatthew Collin\, MD\, PhDLearn about the difference types of adult histiocytic disorders. How are they different? How are they the same? What have we learned recently that makes us believe they are more alike than they once were.\n\n\n 9:00 AM15Histiocytosis at the Cellular LevelAstrid van Halteren\, PhDThis presentation will zoom into the different cell types which can be found in the bone marrow\, blood and tissues of patients diagnosed with histiocytosis\n\n\n 9:15 AM15ECD/Histio Treatment OptionsSam Reynolds\, MDECD/Histio Treatment Options (Current & on the horizon)\n\n\n 9:30 AM15Tagreted Therapy: The Good\, the Bad\, and the UnaffordableDaniel Sokolowski\, PharmDOverview of targeted treatments for histiocytosis and management of their adverse effects.\n\n\n 9:45 AM20BreakN/A\n\n\n 10:05 AM15Advancing treatment for histiocytic neurodegeneration through patient specific modelingNicole Coufal\, MD\, PhDThe importance of patient samples to the science\, and the importance of pilot funding and where we hope to take it in the future.\n\n\n 10:20 AM15What should I know about ECD Treatment and My Heart? Potential cardiac side effects of ECD treatment.Carrie Lenneman\, MD\, MSCIDiscuss common medication used in treatment of ECD . Review  potential cardiac side effects and management strategies of ECD treatment.\n\n\n 10:35 AM15ECD on the BrainEli Diamond\, MDDiscussion of ECD effects on the brain.\n\n\n 10:50 AM15Endocrine Manifestations of Erdheim-Chester DiseaseAlexandra Dodd\, MDUnderstand endocrine manifestations of ECD including effects on the pituitary gland. Understand the treatments for endocrine disorders related to ECD.\n\n\n 11:05 AM40Expert Q&AJulien Haroche\, MD\, PhD\nEli Diamond\, MD\nRonald Go\, MD\nGaurav Goyal\, MD (Moderator)Ask your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research.\n\n\n 11:45 AM15PicturesN/A\n\n\n 12:00 – 1:00pm60LunchN/A\n\n\n 1:00 PM20Research Opportunities (Panel Discussion - 5 min each)Eli Diamond\, MD (Registry)\nGaurav Goyal\, MD (Survivorship)\nJithma Abeykoon\, MD (CSF1R\, ERK)\nMatthew Collins\, MD\, PhDHear the answers from ECD Medical experts about the open research opportunities. Hear up-to-date answers from those who are doing ECD research.\n\n\n 1:20 PM20Expert Question & Answer PanelGaurav Goyal\, MD\nEli Diamond\, MD\nJithme Abeykoon\, MD\nMatthew Collins\, MD\, PhDAsk your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research. Don’t be shy\, ask your questions about ECD in general! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n 1:40 PM60Breakout SessionsKevin O'Brien\, RN\, MS-CRNP (patients) \n\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM (Caregivers)Breakout Session:\n\n- Patients: Personal Challenges in Living with Erdheim-Chester Disease\n\n- Cargivers & Family: Addressing YOUR Emotional Needs\n\n\n 2:40 PM20BreakN/A\n\n\n 3:00 PM15General medical management for ECDKevin O'Brien\, RN\, MS-CRNPHighlighting the importance of managing ongoing general medical problems. For example\, hypertension\, diabetes\, weight\, cholesterol levels\, etc. These uncontrolled medical problems can compound overall disease burden.\n\n\n 3:15 PM15Emotional and Cognitive Changes in ECDSylvia Huang\, PhD\, MA\, MEd\, FAAHPMLiving with Erdheim-Chester Disease can bring emotional\, cognitive\, and fatigue-related changes that are real and often invisible. This session offers understanding\, reassurance\, and practical guidance to help patients and families make sense of these experiences. Participants will learn about supportive strategies and resources that promote resilience\, wellbeing\, and hope.\n\n\n 3:30 PM15Fatigue and Pain in Erdheim-Chester Disease: Root Causes and Practical Strategies for Energy\, Relief\, and ResilienceRichard Taylor\, PhD\, DNP\, CRNP\, APN-BCThis session is designed to empower patients and caregivers by unpacking the root causes of fatigue and pain in Erdheim-Chester Disease (ECD).\n\nThe goal is to offer meaningful\, evidence-informed tools to reduce suffering\, build resilience\, and improve energy\, mobility\, and quality of life.\n\n\n 3:45 PM15Movement is MedicineElizabeth Bohorfoush\, DPTPatients and caregivers receive guidance through gentle\, low-level exercises to help reduce pain\, build strength\, improve posture\, and encourage activity.\n\n\n 4:00 PM20Expert Question & Answer PanelKevin O'Brien\, RN\, MS-CRNP\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM\nRichard Taylor\, PhD\, DNP\, CRNP\, APN-BC\nElizabeth Bohorfoush\, DPTAsk your questions and hear the answers from the experts. Don’t be shy\, ask your questions! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n 4:20 PM10ECDGA CloseJerome Henson\, ED (ECDGA)Learn more about the ECD Global Alliance. Hear why the organization was created and what has been accomplished as a result. Learn how the organization is able to do its work and how you can become more involved in improving the lives of all who have been impacted by Erdheim-Chester Disease.\n\n\n 510\n\n\n\n\nLast ned agenda \nRegistrer deg \nMERK: Registrer deg før 1. februar for å dra nytte av tidligregistreringskostnaden! Spar $100 USD og registrer deg for kun $100 USD! \nMark Heaney Awareness Award & Community Champion Award\n1. februar 2026 – siste dag for å sende inn nominasjon til Mark Heaney Awareness Award & Community Champion Award. \n\nVennligst send inn dine nominasjoner her.\n\nMark Heaney Awareness Award. Nominer en medisinsk fagperson som arbeider for å forbedre livene til ECD-pasienter ved å øke bevisstheten om sykdommen innen legestanden. \nCommunity Champion Award. Nominer en person (pasient\, omsorgsperson\, helsepersonell\, venn osv.) som har gitt av sin tid for å bidra til å forbedre livet til alle dem som er berørt av ECD. \n\n\n\nKontakt:\nErdheim-Chester Disease Global Alliance\nE-post: support@erdheim-chester.org \nPasientplakat – innsendinger\n1. februar 2026 er siste frist for å ferdigstille en pasientposter for utstilling på pasient- og pårørendesamlingen. Vennligst send inn posterinformasjonen din her! \nReisestipendier\nReisestøtte – The Glenn Padnick Memorial Travel Fund tar nå imot søknader til ECDGA-konferansen 2026. \nGlenn Padnick levde et innholdsrikt og innflytelsesrikt liv mens han i flere tiår navigerte i Erdheim-Chester Disease (ECD). Fra 2011 til 2022 satt han med urokkelig engasjement i styret for ECD Global Alliance\, og han sørget alltid for at pasientenes stemmer og behov ble satt i sentrum for alle beslutninger. \nFor å hedre Glenns arv av service og medfølelse har familien hans generøst opprettet Glenn Padnick Memorial Travel Fund. Dette fondet gir økonomisk støtte til pasienter\, omsorgspersoner og helsepersonell som deltar på den årlige ECD-konferansen\, for dem som ellers ikke ville hatt mulighet til å delta på grunn av økonomiske begrensninger. \nDet er nå mulig å søke om reisestøtte til ECD-konferansen 2026. Det er begrenset med midler\, og personer som aldri har deltatt på konferansen før\, vil bli prioritert. Målet vårt er å gjøre denne muligheten tilgjengelig for så mange som mulig i lokalsamfunnet med de ressursene vi har til rådighet. \nSøknadsfrist: 1. februar 2026 Melding om tildeling: Senest 1. mars 2026 \nSøk her: Glenn Padnick Memorial Travel Fund Request. \nHotell- og reiseinformasjon for konferansen\nKonferansehotell\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nTelefon: +1 (659) 251-1934 \nDet er reservert en rekke rom på Hilton Birmingham at UAB for konferansedeltakerne.\nRommene må reserveres innen 6. april 2026 for å få gruppeprisen. \nBestill rom \nHvis du har problemer med å bestille rommet ditt\, vennligst kontakt Simon Hill på Hilton Birmingham Downtown. Hans nummer er 205-910-1970 og hans e-post er simon.hill@hiltoncom. \nTransport til flyplassen\nBirmingham-Shuttlesworth International Airport (BHM)\nGratis transport fra Birmingham flyplass til hotellet tilbys direkte av Hilton Downtown at UAB. \nFor å bruke skyttelbussen: \n\nHent bagasjen din.\nRing hotellet på 205-933-9000 for å bestille skyttelbuss.\nGå til dør nr. 4L\, og vent på bussen merket “Hilton”.\n\nReiser via Atlanta\nHartsfield-Jackson Atlanta internasjonale lufthavn (ATL) ligger ca. 3 timer fra Birmingham\, og tilbyr internasjonale direkteflyvninger til de fleste land. Det tilbys skytteltransport mellom Atlanta lufthavn og Birmingham for reisende som ankommer via ATL. \nLenke til shuttleservice \nRegistrer deg \nVåre sponsorer\nDette møtet er gjort mulig av vår sponsor\, Father Charles Balnaves fra Melbourne\, Australia\, som støtter dette arrangementet til minne om sin avdøde kone\, Tanya. Vi er takknemlige for Father Charles’ fortsatte\, sjenerøse sponsing. Vi setter også pris på støtten fra ARUP Laboratories.\n  URL:https://www.erdheim-chester.org/event/11-arlige-ecd-samling-for-pasienter-og-parorende-birmingham-2026/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, AL\, 35205\, United States CATEGORIES:ECD Pasient- og familiesamling,Utvalgt ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Patient-Family-Gathering-hd-v2.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260429 DTEND;VALUE=DATE:20260501 DTSTAMP:20260410T173706Z CREATED:20251030T142537Z LAST-MODIFIED:20260410T173706Z UID:10000956-1777420800-1777593599@www.erdheim-chester.org SUMMARY:11e jaarlijkse ECD bijeenkomst voor patiënten en familie - Birmingham 2026 DESCRIPTION:Erdheim-Chester Disease Global Alliance kondigt 2026 Patiënt & Familie bijeenkomst aan. \nBirmingham\, AL – De Erdheim-Chester Disease Global Alliance (ECDGA) en UAB School of Medicine nodigen patiënten\, families\, zorgverleners en onderzoekers uit om de datum te onthouden. \n\nPatiënt & Familie bijeenkomst (PFG): 29-30 april 2026\n\nWoensdag 29 april 2026\nMeet and Greet: 15u00-17u00\nLocatie: Hilton at UAB Downtown \nDonderdag 30 april 2026\nBijeenkomst voor patiënten & familie: 08u00-16u30\nLocatie: Marnix E. Heersink Conference Center aan de University of Alabama in Birmingham \nFeestelijk diner: 18u00-20u00\nLocatie: Hilton at UAB Downtown \nDit evenement brengt de wereldwijde gemeenschap van Erdheim-Chester samen met vooraanstaande medische experts om het laatste onderzoek\, klinische inzichten en hulpmiddelen voor de gemeenschap te delen. Deelnemers kunnen educatieve sessies verwachten\, gelegenheden om in contact te komen met collega’s en updates over nieuwe behandelingen en patiëntenzorg. \nMeer details over het hotel en de hoogtepunten van het programma worden de komende maanden bekendgemaakt. \nAgenda\n\n\n\n\n TimeAllocated minutes (510 min total)Presentation Subject Possibilities (Actual Titles to be Provided by Presenters)PresenterSession Description\n\n\n\n\n 8:00 AM30Registration & Light Breakfast\n\n\n 8:30 AM15Welcome to Birmingham & PFG MeetingGaurav Goyal\, MDWelcome to the 11th Annual Erdheim-Chester Disease International Conference! Introductions to Birmingham\, UAB and the ECD Global Alliance.\n\n\n 8:45 AM15Manifestations of histiocytosis in adultsMatthew Collin\, MD\, PhDLearn about the difference types of adult histiocytic disorders. How are they different? How are they the same? What have we learned recently that makes us believe they are more alike than they once were.\n\n\n 9:00 AM15Histiocytosis at the Cellular LevelAstrid van Halteren\, PhDThis presentation will zoom into the different cell types which can be found in the bone marrow\, blood and tissues of patients diagnosed with histiocytosis\n\n\n 9:15 AM15ECD/Histio Treatment OptionsSam Reynolds\, MDECD/Histio Treatment Options (Current & on the horizon)\n\n\n 9:30 AM15Tagreted Therapy: The Good\, the Bad\, and the UnaffordableDaniel Sokolowski\, PharmDOverview of targeted treatments for histiocytosis and management of their adverse effects.\n\n\n 9:45 AM20BreakN/A\n\n\n 10:05 AM15Advancing treatment for histiocytic neurodegeneration through patient specific modelingNicole Coufal\, MD\, PhDThe importance of patient samples to the science\, and the importance of pilot funding and where we hope to take it in the future.\n\n\n 10:20 AM15What should I know about ECD Treatment and My Heart? Potential cardiac side effects of ECD treatment.Carrie Lenneman\, MD\, MSCIDiscuss common medication used in treatment of ECD . Review  potential cardiac side effects and management strategies of ECD treatment.\n\n\n 10:35 AM15ECD on the BrainEli Diamond\, MDDiscussion of ECD effects on the brain.\n\n\n 10:50 AM15Endocrine Manifestations of Erdheim-Chester DiseaseAlexandra Dodd\, MDUnderstand endocrine manifestations of ECD including effects on the pituitary gland. Understand the treatments for endocrine disorders related to ECD.\n\n\n 11:05 AM40Expert Q&AJulien Haroche\, MD\, PhD\nEli Diamond\, MD\nRonald Go\, MD\nGaurav Goyal\, MD (Moderator)Ask your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research.\n\n\n 11:45 AM15PicturesN/A\n\n\n 12:00 – 1:00pm60LunchN/A\n\n\n 1:00 PM20Research Opportunities (Panel Discussion - 5 min each)Eli Diamond\, MD (Registry)\nGaurav Goyal\, MD (Survivorship)\nJithma Abeykoon\, MD (CSF1R\, ERK)\nMatthew Collins\, MD\, PhDHear the answers from ECD Medical experts about the open research opportunities. Hear up-to-date answers from those who are doing ECD research.\n\n\n 1:20 PM20Expert Question & Answer PanelGaurav Goyal\, MD\nEli Diamond\, MD\nJithme Abeykoon\, MD\nMatthew Collins\, MD\, PhDAsk your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research. Don’t be shy\, ask your questions about ECD in general! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n 1:40 PM60Breakout SessionsKevin O'Brien\, RN\, MS-CRNP (patients) \n\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM (Caregivers)Breakout Session:\n\n- Patients: Personal Challenges in Living with Erdheim-Chester Disease\n\n- Cargivers & Family: Addressing YOUR Emotional Needs\n\n\n 2:40 PM20BreakN/A\n\n\n 3:00 PM15General medical management for ECDKevin O'Brien\, RN\, MS-CRNPHighlighting the importance of managing ongoing general medical problems. For example\, hypertension\, diabetes\, weight\, cholesterol levels\, etc. These uncontrolled medical problems can compound overall disease burden.\n\n\n 3:15 PM15Emotional and Cognitive Changes in ECDSylvia Huang\, PhD\, MA\, MEd\, FAAHPMLiving with Erdheim-Chester Disease can bring emotional\, cognitive\, and fatigue-related changes that are real and often invisible. This session offers understanding\, reassurance\, and practical guidance to help patients and families make sense of these experiences. Participants will learn about supportive strategies and resources that promote resilience\, wellbeing\, and hope.\n\n\n 3:30 PM15Fatigue and Pain in Erdheim-Chester Disease: Root Causes and Practical Strategies for Energy\, Relief\, and ResilienceRichard Taylor\, PhD\, DNP\, CRNP\, APN-BCThis session is designed to empower patients and caregivers by unpacking the root causes of fatigue and pain in Erdheim-Chester Disease (ECD).\n\nThe goal is to offer meaningful\, evidence-informed tools to reduce suffering\, build resilience\, and improve energy\, mobility\, and quality of life.\n\n\n 3:45 PM15Movement is MedicineElizabeth Bohorfoush\, DPTPatients and caregivers receive guidance through gentle\, low-level exercises to help reduce pain\, build strength\, improve posture\, and encourage activity.\n\n\n 4:00 PM20Expert Question & Answer PanelKevin O'Brien\, RN\, MS-CRNP\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM\nRichard Taylor\, PhD\, DNP\, CRNP\, APN-BC\nElizabeth Bohorfoush\, DPTAsk your questions and hear the answers from the experts. Don’t be shy\, ask your questions! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n 4:20 PM10ECDGA CloseJerome Henson\, ED (ECDGA)Learn more about the ECD Global Alliance. Hear why the organization was created and what has been accomplished as a result. Learn how the organization is able to do its work and how you can become more involved in improving the lives of all who have been impacted by Erdheim-Chester Disease.\n\n\n 510\n\n\n\n\nDownload de agenda \nRegistreer \nLET OP: Registreer vóór 1 februari om te profiteren van de vroegboekkorting! Bespaar $100 USD en registreer je voor slechts $100 USD! \nMark Heaney Bewustzijnsprijs & prijs voor gemeenschapskampioen\n1 februari 2026 – Laatste dag om je nominatie voor de Mark Heaney Awareness Award & Community Champion Award in te zenden. \n\nStuur uw nominaties in hier.\n\nMark Heaney Bewustzijnsprijs. Nomineer een medische professional die zich inzet om het leven van ECD-patiënten te verbeteren door de ziekte onder de aandacht te brengen binnen de medische wereld. \nPrijs voor gemeenschapskampioen. Nomineer iemand (patiënt\, verzorger\, medisch professional\, vriend\, etc.) die zich vrijwillig heeft ingezet om het leven van iedereen die te maken heeft met ECD te verbeteren. \n\n\n\nContact:\nErdheim-Chester Disease Global Alliance\nE-mail: support@erdheim-chester.org \nPatiëntenposter – Inzendingen\n1 februari 2026 is de laatste dag om een patiëntenposter in te dienen voor weergave tijdens de bijeenkomst voor patiënten & familie. Dien hier uw posterinformatie in! \nReisbeurzen\nReisbijstand – Het Glenn Padnick Memorial Travel Fund We accepteren nu aanvragen voor de ECDGA-conferentie van 2026. \nGlenn Padnick leidde een vol en invloedrijk leven terwijl hij decennialang met de ziekte van Erdheim-Chester (ECD) omging. Van 2011 tot 2022 was hij met niet-aflatende toewijding lid van de raad van bestuur van de ECD Global Alliance\, waarbij hij er altijd voor zorgde dat de stem en behoeften van patiënten centraal bleven staan bij elke beslissing. \nTer ere van Glenn’s nalatenschap van dienstbaarheid en medeleven heeft zijn familie het Glenn Padnick Memorial Travel Fund opgericht. Dit fonds voorziet in financiële steun om patiënten\, zorgverleners en medische professionals te helpen de jaarlijkse ECD-conferentie bij te wonen voor diegenen die anders niet zouden kunnen deelnemen omwille van financiële beperkingen. \nEr kunnen nu aanvragen worden ingediend voor reisondersteuning voor de ECD-conferentie van 2026. De financiering is beperkt en er wordt voorrang gegeven aan personen die het evenement nog nooit hebben bijgewoond. Ons doel is om deze kans met de beschikbare middelen voor zoveel mogelijk leden van de gemeenschap beschikbaar te maken. \nAanvraagdeadline: 1 februari 2026 Kennisgeving van toekenning: Uiterlijk 1 maart 2026 \nVraag hier aan: Glenn Padnick Memorial Reisfonds Aanvraag. \nConferentie Hotel & Reisinformatie\nConferentie Hotel\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nTelefoon: +1 (659) 251-1934 \nEr is een blok kamers gereserveerd in het Hilton Birmingham at UAB voor deelnemers aan de conferentie.\nKamers moeten voor 6 april 2026 gereserveerd zijn om het groepstarief te ontvangen. \nBoek een kamer \nAls u problemen ondervindt bij het boeken van uw kamer\, neem dan contact op met Simon Hill van het Hilton Birmingham Downtown. Zijn nummer is 205-910-1970 en zijn e-mailadres is simon.hill@hiltoncom. \nLuchthavenvervoer\nBirmingham-Shuttlesworth International Airport (BHM)\nGratis pendeldienst is beschikbaar van de luchthaven van Birmingham naar het hotel en wordt rechtstreeks verzorgd door het Hilton Downtown at UAB. \nOm de shuttle te gebruiken: \n\nHaal je bagage op.\nBel het hotel op 205-933-9000 om de shuttle aan te vragen.\nGa naar deur #4L en wacht op de bus met de tekst “Hilton”.\n\nReizen via Atlanta\nHartsfield-Jackson Atlanta International Airport (ATL) ligt op ongeveer 3 uur van Birmingham en biedt rechtstreekse internationale vluchten naar de meeste landen. Er zijn pendeldiensten beschikbaar tussen het vliegveld van Atlanta en Birmingham voor reizigers die via ATL arriveren. \nLink voor pendeldienst \nRegistreer \nOnze sponsors\nDeze bijeenkomst wordt mogelijk gemaakt door onze sponsor\, pastoor Charles Balnaves uit Melbourne\, Australië\, die dit evenement steunt ter nagedachtenis aan zijn overleden vrouw\, Tanya. Wij zijn dankbaar voor de voortdurende\, gulle sponsoring van pastoor Charles. Wij waarderen ook de steun van ARUP Laboratories.\n  URL:https://www.erdheim-chester.org/event/11e-jaarlijkse-ecd-bijeenkomst-voor-patienten-en-familie-birmingham-2026/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, AL\, 35205\, United States CATEGORIES:Aanbevolen,ECD Bijeenkomst voor patiënt en familie ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Patient-Family-Gathering-hd-v2.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260429 DTEND;VALUE=DATE:20260501 DTSTAMP:20260410T173704Z CREATED:20251030T142537Z LAST-MODIFIED:20260410T173704Z UID:10000964-1777420800-1777593599@www.erdheim-chester.org SUMMARY:11° Raduno annuale dei pazienti e delle famiglie ECD - Birmingham 2026 DESCRIPTION:L’Alleanza Globale per la Malattia di Chester annuncia il raduno dei pazienti e delle famiglie del 2026. \nBirmingham\, AL – L’Erdheim-Chester Disease Global Alliance (ECDGA) e la UAB School of Medicine invitano pazienti\, famiglie\, operatori sanitari e ricercatori a salvare la data. \n\nRaduno dei pazienti e delle famiglie (PFG): 29-30 aprile 2026\n\nMercoledì 29 aprile 2026\nIncontro di benvenuto: 15:00-17:00\nLuogo: Hilton at UAB Downtown \nGiovedì 30 aprile 2026\nIncontro pazienti e famiglie: 8:00-16:30\nLuogo: Marnix E. Heersink Conference Center presso l’Università dell’Alabama a Birmingham \nCena di gala: 18:00-20:00\nLuogo: Hilton at UAB Downtown \nQuesto evento riunirà la comunità globale della malattia di Erdheim-Chester con i principali esperti medici per condividere le ultime ricerche\, le intuizioni cliniche e le risorse della comunità. I partecipanti possono aspettarsi sessioni educative\, opportunità di entrare in contatto con altri colleghi e aggiornamenti sui trattamenti emergenti e sull’assistenza ai pazienti. \nUlteriori dettagli sull’hotel e sui punti salienti del programma saranno resi noti nei prossimi mesi. \nAgenda\n\n\n\n\n TimeAllocated minutes (510 min total)Presentation Subject Possibilities (Actual Titles to be Provided by Presenters)PresenterSession Description\n\n\n\n\n 8:00 AM30Registration & Light Breakfast\n\n\n 8:30 AM15Welcome to Birmingham & PFG MeetingGaurav Goyal\, MDWelcome to the 11th Annual Erdheim-Chester Disease International Conference! Introductions to Birmingham\, UAB and the ECD Global Alliance.\n\n\n 8:45 AM15Manifestations of histiocytosis in adultsMatthew Collin\, MD\, PhDLearn about the difference types of adult histiocytic disorders. How are they different? How are they the same? What have we learned recently that makes us believe they are more alike than they once were.\n\n\n 9:00 AM15Histiocytosis at the Cellular LevelAstrid van Halteren\, PhDThis presentation will zoom into the different cell types which can be found in the bone marrow\, blood and tissues of patients diagnosed with histiocytosis\n\n\n 9:15 AM15ECD/Histio Treatment OptionsSam Reynolds\, MDECD/Histio Treatment Options (Current & on the horizon)\n\n\n 9:30 AM15Tagreted Therapy: The Good\, the Bad\, and the UnaffordableDaniel Sokolowski\, PharmDOverview of targeted treatments for histiocytosis and management of their adverse effects.\n\n\n 9:45 AM20BreakN/A\n\n\n 10:05 AM15Advancing treatment for histiocytic neurodegeneration through patient specific modelingNicole Coufal\, MD\, PhDThe importance of patient samples to the science\, and the importance of pilot funding and where we hope to take it in the future.\n\n\n 10:20 AM15What should I know about ECD Treatment and My Heart? Potential cardiac side effects of ECD treatment.Carrie Lenneman\, MD\, MSCIDiscuss common medication used in treatment of ECD . Review  potential cardiac side effects and management strategies of ECD treatment.\n\n\n 10:35 AM15ECD on the BrainEli Diamond\, MDDiscussion of ECD effects on the brain.\n\n\n 10:50 AM15Endocrine Manifestations of Erdheim-Chester DiseaseAlexandra Dodd\, MDUnderstand endocrine manifestations of ECD including effects on the pituitary gland. Understand the treatments for endocrine disorders related to ECD.\n\n\n 11:05 AM40Expert Q&AJulien Haroche\, MD\, PhD\nEli Diamond\, MD\nRonald Go\, MD\nGaurav Goyal\, MD (Moderator)Ask your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research.\n\n\n 11:45 AM15PicturesN/A\n\n\n 12:00 – 1:00pm60LunchN/A\n\n\n 1:00 PM20Research Opportunities (Panel Discussion - 5 min each)Eli Diamond\, MD (Registry)\nGaurav Goyal\, MD (Survivorship)\nJithma Abeykoon\, MD (CSF1R\, ERK)\nMatthew Collins\, MD\, PhDHear the answers from ECD Medical experts about the open research opportunities. Hear up-to-date answers from those who are doing ECD research.\n\n\n 1:20 PM20Expert Question & Answer PanelGaurav Goyal\, MD\nEli Diamond\, MD\nJithme Abeykoon\, MD\nMatthew Collins\, MD\, PhDAsk your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research. Don’t be shy\, ask your questions about ECD in general! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n 1:40 PM60Breakout SessionsKevin O'Brien\, RN\, MS-CRNP (patients) \n\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM (Caregivers)Breakout Session:\n\n- Patients: Personal Challenges in Living with Erdheim-Chester Disease\n\n- Cargivers & Family: Addressing YOUR Emotional Needs\n\n\n 2:40 PM20BreakN/A\n\n\n 3:00 PM15General medical management for ECDKevin O'Brien\, RN\, MS-CRNPHighlighting the importance of managing ongoing general medical problems. For example\, hypertension\, diabetes\, weight\, cholesterol levels\, etc. These uncontrolled medical problems can compound overall disease burden.\n\n\n 3:15 PM15Emotional and Cognitive Changes in ECDSylvia Huang\, PhD\, MA\, MEd\, FAAHPMLiving with Erdheim-Chester Disease can bring emotional\, cognitive\, and fatigue-related changes that are real and often invisible. This session offers understanding\, reassurance\, and practical guidance to help patients and families make sense of these experiences. Participants will learn about supportive strategies and resources that promote resilience\, wellbeing\, and hope.\n\n\n 3:30 PM15Fatigue and Pain in Erdheim-Chester Disease: Root Causes and Practical Strategies for Energy\, Relief\, and ResilienceRichard Taylor\, PhD\, DNP\, CRNP\, APN-BCThis session is designed to empower patients and caregivers by unpacking the root causes of fatigue and pain in Erdheim-Chester Disease (ECD).\n\nThe goal is to offer meaningful\, evidence-informed tools to reduce suffering\, build resilience\, and improve energy\, mobility\, and quality of life.\n\n\n 3:45 PM15Movement is MedicineElizabeth Bohorfoush\, DPTPatients and caregivers receive guidance through gentle\, low-level exercises to help reduce pain\, build strength\, improve posture\, and encourage activity.\n\n\n 4:00 PM20Expert Question & Answer PanelKevin O'Brien\, RN\, MS-CRNP\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM\nRichard Taylor\, PhD\, DNP\, CRNP\, APN-BC\nElizabeth Bohorfoush\, DPTAsk your questions and hear the answers from the experts. Don’t be shy\, ask your questions! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n 4:20 PM10ECDGA CloseJerome Henson\, ED (ECDGA)Learn more about the ECD Global Alliance. Hear why the organization was created and what has been accomplished as a result. Learn how the organization is able to do its work and how you can become more involved in improving the lives of all who have been impacted by Erdheim-Chester Disease.\n\n\n 510\n\n\n\n\nScarica il programma \nRegistro \nNOTA: Registrati prima del 1° febbraio per approfittare del costo di registrazione anticipato! Risparmia $100 USD e registrati a soli $100 USD! \nPremio Mark Heaney per la sensibilizzazione e Premio Campione della Comunità\n1 febbraio 2026 – Ultimo giorno utile per presentare la tua candidatura al premio Mark Heaney Awareness Award e al premio Community Champion. \n\nInvia le tue candidature qui.\n\nPremio Mark Heaney per la sensibilizzazione. Nomina un medico che si sta impegnando per migliorare la vita dei pazienti ECD sensibilizzando la professione medica sulla malattia. \nPremio Campione della Comunità. Nomina chiunque (paziente\, caregiver\, professionista medico\, amico\, ecc.) abbia offerto il proprio tempo per contribuire a migliorare la vita di tutte le persone colpite dall’ECD. \n\n\n\nContatti:\nErdheim-Chester Disease Global Alliance\nEmail: support@erdheim-chester.org \nPoster per il paziente – Invio\nIl 1° febbraio 2026 è l’ultimo giorno per completare un poster del paziente da esporre all’incontro pazienti e famiglie. Invia qui le informazioni sul tuo poster! \nBorse di studio per viaggi\nAssistenza per i viaggi – Il Glenn Padnick Memorial Travel Fund Sta accettando le domande per la Conferenza ECDGA del 2026. \nGlenn Padnick ha vissuto una vita piena e ricca di conseguenze\, affrontando la malattia di Erdheim-Chester (ECD) per decenni. Dal 2011 al 2022 ha fatto parte con incrollabile dedizione del Consiglio di Amministrazione dell’ECD Global Alliance\, assicurando sempre che le voci e le esigenze dei pazienti rimanessero al centro di ogni decisione. \nIn onore dell’eredità di servizio e compassione di Glenn\, la sua famiglia ha generosamente istituito il Glenn Padnick Memorial Travel Fund. Questo fondo fornisce assistenza finanziaria per aiutare i pazienti\, gli assistenti e i professionisti del settore medico a partecipare alla conferenza annuale dell’ECD per coloro che altrimenti non potrebbero partecipare a causa di vincoli finanziari. \nSono aperte le richieste di assistenza per il viaggio alla Conferenza ECD 2026. I fondi sono limitati e verrà data priorità alle persone che non hanno mai partecipato all’evento. Il nostro obiettivo è quello di rendere disponibile questa opportunità al maggior numero possibile di membri della comunità con le risorse disponibili. \nScadenza per la presentazione delle domande: 1 febbraio 2026 Notifiche di assegnazione: Entro il 1 marzo 2026 \nFai domanda qui: Richiesta del Glenn Padnick Memorial Travel Fund. \nInformazioni sull’hotel e sul viaggio per la conferenza\nHotel per conferenze\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nTelefono: +1 (659) 251-1934 \nAll’Hilton Birmingham at UAB è stato riservato un blocco di camere per i partecipanti alla conferenza.\nLe camere devono essere prenotate entro il 6 aprile 2026 per poter usufruire della tariffa di gruppo. \nPrenota una stanza \nSe hai problemi con la prenotazione della tua camera\, contatta Simon Hill presso l’Hilton Birmingham Downtown. Il suo numero è 205-910-1970 e la sua email è simon.hill@hiltoncom. \nTrasporto aeroportuale\nAeroporto internazionale di Birmingham-Shuttlesworth (BHM)\nDall’aeroporto di Birmingham all’hotel è disponibile un servizio navetta gratuito fornito direttamente dall’Hilton Downtown at UAB. \nPer utilizzare la navetta: \n\nRitira i tuoi bagagli.\nChiama l’hotel al numero 205-933-9000 per richiedere la navetta.\nVai alla porta #4L e aspetta l’autobus con la scritta “Hilton”.\n\nViaggiando via Atlanta\nL’aeroporto internazionale Hartsfield-Jackson Atlanta (ATL) dista circa 3 ore da Birmingham e offre voli internazionali diretti verso la maggior parte dei paesi. Sono disponibili servizi navetta tra l’aeroporto di Atlanta e Birmingham per i viaggiatori che arrivano da ATL. \nLink al servizio navetta \nRegistro \nI nostri sponsor\nQuesto incontro è reso possibile dal nostro sponsor\, Padre Charles Balnaves di Melbourne\, Australia\, che sostiene questo evento in memoria della sua defunta moglie\, Tanya. Siamo grati per la continua e generosa sponsorizzazione di Padre Charles. Apprezziamo inoltre il supporto di ARUP Laboratories.\n  URL:https://www.erdheim-chester.org/event/11-raduno-annuale-dei-pazienti-e-delle-famiglie-ecd-birmingham-2026/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, AL\, 35205\, United States CATEGORIES:ECD Riunione di pazienti e familiari,In primo piano ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Patient-Family-Gathering-hd-v2.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260429 DTEND;VALUE=DATE:20260501 DTSTAMP:20260410T173700Z CREATED:20251030T142537Z LAST-MODIFIED:20260410T173700Z UID:10000957-1777420800-1777593599@www.erdheim-chester.org SUMMARY:11ª Reunión Anual de Pacientes y Familiares de ECD - Birmingham 2026 DESCRIPTION:La Alianza Mundial contra la Enfermedad de Erdheim-Chester anuncia la Reunión de Pacientes y Familiares 2026. \nBirmingham\, AL – La Alianza Mundial contra la Enfermedad de Erdheim-Chester (ECDGA) y la Facultad de Medicina de la UAB invitan a pacientes\, familiares\, profesionales sanitarios e investigadores a que reserven la fecha. \n\nReunión de Pacientes y Familiares (PFG): 29-30 de abril de 2026\n\nMiércoles\, 29 de abril de 2026\nRecepción y bienvenida: 15:00-17:00\nUbicación: Hilton at UAB Downtown \nJueves\, 30 de abril de 2026\nEncuentro de pacientes y familias: 8:00-16:30\nUbicación: Marnix E. Heersink Conference Center at the University of Alabama at Birmingham \nCena de celebración: 18:00-20:00\nUbicación: Hilton at UAB Downtown \nEste acto reunirá a la comunidad mundial de la enfermedad de Erdheim-Chester con destacados expertos médicos para compartir las últimas investigaciones\, perspectivas clínicas y recursos comunitarios. Los asistentes pueden esperar sesiones educativas\, oportunidades de conectar con compañeros y actualizaciones sobre tratamientos emergentes y atención al paciente. \nEn los próximos meses se darán a conocer más detalles sobre el hotel y los aspectos más destacados del programa. \nAgenda\n\n\n\n\n TimeAllocated minutes (510 min total)Presentation Subject Possibilities (Actual Titles to be Provided by Presenters)PresenterSession Description\n\n\n\n\n 8:00 AM30Registration & Light Breakfast\n\n\n 8:30 AM15Welcome to Birmingham & PFG MeetingGaurav Goyal\, MDWelcome to the 11th Annual Erdheim-Chester Disease International Conference! Introductions to Birmingham\, UAB and the ECD Global Alliance.\n\n\n 8:45 AM15Manifestations of histiocytosis in adultsMatthew Collin\, MD\, PhDLearn about the difference types of adult histiocytic disorders. How are they different? How are they the same? What have we learned recently that makes us believe they are more alike than they once were.\n\n\n 9:00 AM15Histiocytosis at the Cellular LevelAstrid van Halteren\, PhDThis presentation will zoom into the different cell types which can be found in the bone marrow\, blood and tissues of patients diagnosed with histiocytosis\n\n\n 9:15 AM15ECD/Histio Treatment OptionsSam Reynolds\, MDECD/Histio Treatment Options (Current & on the horizon)\n\n\n 9:30 AM15Tagreted Therapy: The Good\, the Bad\, and the UnaffordableDaniel Sokolowski\, PharmDOverview of targeted treatments for histiocytosis and management of their adverse effects.\n\n\n 9:45 AM20BreakN/A\n\n\n 10:05 AM15Advancing treatment for histiocytic neurodegeneration through patient specific modelingNicole Coufal\, MD\, PhDThe importance of patient samples to the science\, and the importance of pilot funding and where we hope to take it in the future.\n\n\n 10:20 AM15What should I know about ECD Treatment and My Heart? Potential cardiac side effects of ECD treatment.Carrie Lenneman\, MD\, MSCIDiscuss common medication used in treatment of ECD . Review  potential cardiac side effects and management strategies of ECD treatment.\n\n\n 10:35 AM15ECD on the BrainEli Diamond\, MDDiscussion of ECD effects on the brain.\n\n\n 10:50 AM15Endocrine Manifestations of Erdheim-Chester DiseaseAlexandra Dodd\, MDUnderstand endocrine manifestations of ECD including effects on the pituitary gland. Understand the treatments for endocrine disorders related to ECD.\n\n\n 11:05 AM40Expert Q&AJulien Haroche\, MD\, PhD\nEli Diamond\, MD\nRonald Go\, MD\nGaurav Goyal\, MD (Moderator)Ask your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research.\n\n\n 11:45 AM15PicturesN/A\n\n\n 12:00 – 1:00pm60LunchN/A\n\n\n 1:00 PM20Research Opportunities (Panel Discussion - 5 min each)Eli Diamond\, MD (Registry)\nGaurav Goyal\, MD (Survivorship)\nJithma Abeykoon\, MD (CSF1R\, ERK)\nMatthew Collins\, MD\, PhDHear the answers from ECD Medical experts about the open research opportunities. Hear up-to-date answers from those who are doing ECD research.\n\n\n 1:20 PM20Expert Question & Answer PanelGaurav Goyal\, MD\nEli Diamond\, MD\nJithme Abeykoon\, MD\nMatthew Collins\, MD\, PhDAsk your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research. Don’t be shy\, ask your questions about ECD in general! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n 1:40 PM60Breakout SessionsKevin O'Brien\, RN\, MS-CRNP (patients) \n\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM (Caregivers)Breakout Session:\n\n- Patients: Personal Challenges in Living with Erdheim-Chester Disease\n\n- Cargivers & Family: Addressing YOUR Emotional Needs\n\n\n 2:40 PM20BreakN/A\n\n\n 3:00 PM15General medical management for ECDKevin O'Brien\, RN\, MS-CRNPHighlighting the importance of managing ongoing general medical problems. For example\, hypertension\, diabetes\, weight\, cholesterol levels\, etc. These uncontrolled medical problems can compound overall disease burden.\n\n\n 3:15 PM15Emotional and Cognitive Changes in ECDSylvia Huang\, PhD\, MA\, MEd\, FAAHPMLiving with Erdheim-Chester Disease can bring emotional\, cognitive\, and fatigue-related changes that are real and often invisible. This session offers understanding\, reassurance\, and practical guidance to help patients and families make sense of these experiences. Participants will learn about supportive strategies and resources that promote resilience\, wellbeing\, and hope.\n\n\n 3:30 PM15Fatigue and Pain in Erdheim-Chester Disease: Root Causes and Practical Strategies for Energy\, Relief\, and ResilienceRichard Taylor\, PhD\, DNP\, CRNP\, APN-BCThis session is designed to empower patients and caregivers by unpacking the root causes of fatigue and pain in Erdheim-Chester Disease (ECD).\n\nThe goal is to offer meaningful\, evidence-informed tools to reduce suffering\, build resilience\, and improve energy\, mobility\, and quality of life.\n\n\n 3:45 PM15Movement is MedicineElizabeth Bohorfoush\, DPTPatients and caregivers receive guidance through gentle\, low-level exercises to help reduce pain\, build strength\, improve posture\, and encourage activity.\n\n\n 4:00 PM20Expert Question & Answer PanelKevin O'Brien\, RN\, MS-CRNP\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM\nRichard Taylor\, PhD\, DNP\, CRNP\, APN-BC\nElizabeth Bohorfoush\, DPTAsk your questions and hear the answers from the experts. Don’t be shy\, ask your questions! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n 4:20 PM10ECDGA CloseJerome Henson\, ED (ECDGA)Learn more about the ECD Global Alliance. Hear why the organization was created and what has been accomplished as a result. Learn how the organization is able to do its work and how you can become more involved in improving the lives of all who have been impacted by Erdheim-Chester Disease.\n\n\n 510\n\n\n\n\nDescargar agenda \nRegístrate en \nNOTA: ¡Inscríbete antes del 1 de febrero para aprovechar el coste de inscripción anticipada! ¡Ahorra 100 USD y regístrate por sólo 100 USD! \nPremio Mark Heaney a la Sensibilización y Premio al Campeón de la Comunidad\n1 de febrero de 2026 – Último día para presentar tu candidatura al Premio Mark Heaney a la Concienciación y al Premio al Campeón de la Comunidad. \n\nPor favor\, envía tus candidaturas aquí.\n\nPremio Mark Heaney a la Concienciación. Nomina a un profesional médico que trabaje para mejorar la vida de los pacientes de ECD\, sensibilizando a la profesión médica sobre la enfermedad. \nPremio al Campeón de la Comunidad. Nomina a cualquier persona (paciente\, cuidador\, profesional médico\, amigo\, etc.) que haya dedicado su tiempo voluntariamente a ayudar a mejorar la vida de todas las personas afectadas por el ECD. \n\n\n\nContacto:\nErdheim-Chester Disease Global Alliance\nCorreo electrónico: support@erdheim-chester.org \nPóster para pacientes – Presentaciones\nEl 1 de febrero de 2026 es el último día para completar un póster de paciente para su exposición en el Encuentro de pacientes y familias. ¡Envíe aquí la información de su póster! \nBecas de viaje\nAyuda para viajes – Fondo para viajes en memoria de Glenn Padnick Se aceptan solicitudes para la Conferencia de la ECDGA de 2026. \nGlenn Padnick vivió una vida plena e impactante mientras navegaba por la enfermedad de Erdheim-Chester (ECD) durante décadas. De 2011 a 2022\, trabajó con dedicación inquebrantable en la Junta Directiva de la Alianza Global ECD\, asegurándose siempre de que las voces y necesidades de los pacientes ocuparan un lugar central en cada decisión. \nEn honor al legado de servicio y compasión de Glenn\, su familia creó generosamente el Fondo de Viajes en Memoria de Glenn Padnick. Este fondo proporciona ayuda económica para que los pacientes\, cuidadores y profesionales de la medicina puedan asistir a la conferencia anual de la ECD a quienes\, de otro modo\, no podrían participar debido a limitaciones económicas. \nYa están abiertas las solicitudes de ayuda de viaje para la Conferencia ECD 2026. La financiación es limitada\, y se dará prioridad a las personas que no hayan asistido nunca al evento. Nuestro objetivo es poner esta oportunidad a disposición del mayor número posible de miembros de la comunidad con los recursos disponibles. \nPlazo de solicitud: 1 de febrero de 2026 Notificaciones de adjudicación: A más tardar el 1 de marzo de 2026 \nSolicítalo aquí: Solicitud del Fondo para Viajes en Memoria de Glenn Padnick. \nInformación sobre hoteles y viajes\nHotel de Congresos\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nTeléfono: +1 (659) 251-1934 \nSe ha reservado un bloque de habitaciones en el Hilton Birmingham de la UAB para los asistentes a la conferencia.\nLas habitaciones deben reservarse antes del 6 de abril de 2026 para recibir la tarifa de grupo. \nReservar una habitación \nSi tiene algún problema al reservar su habitación\, póngase en contacto con Simon Hill en el Hilton Birmingham Downtown. Su número es el 205-910-1970 y su correo electrónico es simon.hill@hiltoncom. \nTransporte al aeropuerto\nAeropuerto Internacional de Birmingham-Shuttlesworth (BHM)\nHay un servicio gratuito de lanzadera desde el aeropuerto de Birmingham hasta el hotel\, proporcionado directamente por el Hilton Downtown de la UAB. \nPara utilizar la lanzadera: \n\nRecoge tu equipaje.\nLlama al hotel al 205-933-9000 para solicitar el servicio de transporte.\nDirígete a la puerta nº 4L y espera el autobús marcado “Hilton”.\n\nViajar vía Atlanta\nEl Aeropuerto Internacional Hartsfield-Jackson de Atlanta (ATL) está a unas 3 horas de Birmingham y ofrece vuelos internacionales directos a la mayoría de los países. Hay servicios de enlace entre el aeropuerto de Atlanta y Birmingham para los viajeros que lleguen a través de ATL. \nEnlace al servicio de transporte \nRegístrate en \nNuestros patrocinadores\nEsta reunión es posible gracias a nuestro patrocinador\, el padre Charles Balnaves de Melbourne\, Australia\, quien apoya este evento en memoria de su difunta esposa\, Tanya. Agradecemos el continuo y generoso patrocinio del padre Charles. También agradecemos el apoyo de ARUP Laboratories.\n  URL:https://www.erdheim-chester.org/event/11a-reunion-anual-de-pacientes-y-familiares-de-ecd-birmingham-2026/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, AL\, 35205\, United States CATEGORIES:Destacado,ECD Reunión de pacientes y familiares ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Patient-Family-Gathering-hd-v2.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260429 DTEND;VALUE=DATE:20260501 DTSTAMP:20260410T173702Z CREATED:20251030T142537Z LAST-MODIFIED:20260410T173702Z UID:10000965-1777420800-1777593599@www.erdheim-chester.org SUMMARY:11η Ετήσια συγκέντρωση ασθενών και οικογενειών με ECD - Birmingham 2026 DESCRIPTION:Η Παγκόσμια Συμμαχία για τη νόσο Erdheim-Chester ανακοινώνει τη συγκέντρωση ασθενών και οικογενειών 2026. \nΜπέρμιγχαμ\, AL – Η Παγκόσμια Συμμαχία για τη Νόσο Erdheim-Chester (ECDGA) και η Ιατρική Σχολή του UAB προσκαλούν ασθενείς\, οικογένειες\, επαγγελματίες υγείας και ερευνητές να αποθηκεύσουν την ημερομηνία. \n\nΣυγκέντρωση ασθενών και οικογενειών (PFG): 29-30 Απριλίου 2026\n\nΤετάρτη\, 29 Απριλίου 2026\nΣυνάντηση γνωριμίας: 15:00-17:00\nΤοποθεσία: Hilton at UAB Downtown \nΠέμπτη\, 30 Απριλίου 2026\nΣυγκέντρωση Ασθενών & Οικογενειών: 8:00 π.μ.-16:30 μ.μ.\nΤοποθεσία: Marnix E. Heersink Conference Center στο Πανεπιστήμιο της Αλαμπάμα στο Μπέρμιγχαμ \nΕπίσημο Δείπνο: 18:00-20:00\nΤοποθεσία: Hilton at UAB Downtown \nΑυτή η εκδήλωση θα φέρει σε επαφή την παγκόσμια κοινότητα της νόσου Erdheim-Chester με κορυφαίους ιατρικούς εμπειρογνώμονες για να μοιραστούν την τελευταία έρευνα\, τις κλινικές γνώσεις και τους πόρους της κοινότητας. Οι συμμετέχοντες μπορούν να περιμένουν εκπαιδευτικές συνεδρίες\, ευκαιρίες για να συνδεθούν με ομότιμους και ενημερώσεις σχετικά με τις αναδυόμενες θεραπείες και τη φροντίδα των ασθενών. \nΠερισσότερες λεπτομέρειες σχετικά με το ξενοδοχείο και τα κυριότερα σημεία του προγράμματος θα ανακοινωθούν τους επόμενους μήνες. \nΑτζέντα\n\n\n\n\n TimeAllocated minutes (510 min total)Presentation Subject Possibilities (Actual Titles to be Provided by Presenters)PresenterSession Description\n\n\n\n\n 8:00 AM30Registration & Light Breakfast\n\n\n 8:30 AM15Welcome to Birmingham & PFG MeetingGaurav Goyal\, MDWelcome to the 11th Annual Erdheim-Chester Disease International Conference! Introductions to Birmingham\, UAB and the ECD Global Alliance.\n\n\n 8:45 AM15Manifestations of histiocytosis in adultsMatthew Collin\, MD\, PhDLearn about the difference types of adult histiocytic disorders. How are they different? How are they the same? What have we learned recently that makes us believe they are more alike than they once were.\n\n\n 9:00 AM15Histiocytosis at the Cellular LevelAstrid van Halteren\, PhDThis presentation will zoom into the different cell types which can be found in the bone marrow\, blood and tissues of patients diagnosed with histiocytosis\n\n\n 9:15 AM15ECD/Histio Treatment OptionsSam Reynolds\, MDECD/Histio Treatment Options (Current & on the horizon)\n\n\n 9:30 AM15Tagreted Therapy: The Good\, the Bad\, and the UnaffordableDaniel Sokolowski\, PharmDOverview of targeted treatments for histiocytosis and management of their adverse effects.\n\n\n 9:45 AM20BreakN/A\n\n\n 10:05 AM15Advancing treatment for histiocytic neurodegeneration through patient specific modelingNicole Coufal\, MD\, PhDThe importance of patient samples to the science\, and the importance of pilot funding and where we hope to take it in the future.\n\n\n 10:20 AM15What should I know about ECD Treatment and My Heart? Potential cardiac side effects of ECD treatment.Carrie Lenneman\, MD\, MSCIDiscuss common medication used in treatment of ECD . Review  potential cardiac side effects and management strategies of ECD treatment.\n\n\n 10:35 AM15ECD on the BrainEli Diamond\, MDDiscussion of ECD effects on the brain.\n\n\n 10:50 AM15Endocrine Manifestations of Erdheim-Chester DiseaseAlexandra Dodd\, MDUnderstand endocrine manifestations of ECD including effects on the pituitary gland. Understand the treatments for endocrine disorders related to ECD.\n\n\n 11:05 AM40Expert Q&AJulien Haroche\, MD\, PhD\nEli Diamond\, MD\nRonald Go\, MD\nGaurav Goyal\, MD (Moderator)Ask your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research.\n\n\n 11:45 AM15PicturesN/A\n\n\n 12:00 – 1:00pm60LunchN/A\n\n\n 1:00 PM20Research Opportunities (Panel Discussion - 5 min each)Eli Diamond\, MD (Registry)\nGaurav Goyal\, MD (Survivorship)\nJithma Abeykoon\, MD (CSF1R\, ERK)\nMatthew Collins\, MD\, PhDHear the answers from ECD Medical experts about the open research opportunities. Hear up-to-date answers from those who are doing ECD research.\n\n\n 1:20 PM20Expert Question & Answer PanelGaurav Goyal\, MD\nEli Diamond\, MD\nJithme Abeykoon\, MD\nMatthew Collins\, MD\, PhDAsk your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research. Don’t be shy\, ask your questions about ECD in general! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n 1:40 PM60Breakout SessionsKevin O'Brien\, RN\, MS-CRNP (patients) \n\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM (Caregivers)Breakout Session:\n\n- Patients: Personal Challenges in Living with Erdheim-Chester Disease\n\n- Cargivers & Family: Addressing YOUR Emotional Needs\n\n\n 2:40 PM20BreakN/A\n\n\n 3:00 PM15General medical management for ECDKevin O'Brien\, RN\, MS-CRNPHighlighting the importance of managing ongoing general medical problems. For example\, hypertension\, diabetes\, weight\, cholesterol levels\, etc. These uncontrolled medical problems can compound overall disease burden.\n\n\n 3:15 PM15Emotional and Cognitive Changes in ECDSylvia Huang\, PhD\, MA\, MEd\, FAAHPMLiving with Erdheim-Chester Disease can bring emotional\, cognitive\, and fatigue-related changes that are real and often invisible. This session offers understanding\, reassurance\, and practical guidance to help patients and families make sense of these experiences. Participants will learn about supportive strategies and resources that promote resilience\, wellbeing\, and hope.\n\n\n 3:30 PM15Fatigue and Pain in Erdheim-Chester Disease: Root Causes and Practical Strategies for Energy\, Relief\, and ResilienceRichard Taylor\, PhD\, DNP\, CRNP\, APN-BCThis session is designed to empower patients and caregivers by unpacking the root causes of fatigue and pain in Erdheim-Chester Disease (ECD).\n\nThe goal is to offer meaningful\, evidence-informed tools to reduce suffering\, build resilience\, and improve energy\, mobility\, and quality of life.\n\n\n 3:45 PM15Movement is MedicineElizabeth Bohorfoush\, DPTPatients and caregivers receive guidance through gentle\, low-level exercises to help reduce pain\, build strength\, improve posture\, and encourage activity.\n\n\n 4:00 PM20Expert Question & Answer PanelKevin O'Brien\, RN\, MS-CRNP\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM\nRichard Taylor\, PhD\, DNP\, CRNP\, APN-BC\nElizabeth Bohorfoush\, DPTAsk your questions and hear the answers from the experts. Don’t be shy\, ask your questions! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n 4:20 PM10ECDGA CloseJerome Henson\, ED (ECDGA)Learn more about the ECD Global Alliance. Hear why the organization was created and what has been accomplished as a result. Learn how the organization is able to do its work and how you can become more involved in improving the lives of all who have been impacted by Erdheim-Chester Disease.\n\n\n 510\n\n\n\n\nΛήψη Προγράμματος \nΕγγραφή \nΣΗΜΕΙΩΣΗ: Εγγραφείτε πριν από την 1η Φεβρουαρίου για να επωφεληθείτε από το κόστος εγγραφής early bird! Εξοικονομήστε $100 USD και εγγραφείτε μόνο με $100 USD! \nΒραβείο Ευαισθητοποίησης Mark Heaney & Βραβείο Κοινοτικού Πρωταθλητή\n1 Φεβρουαρίου 2026 – Τελευταία ημέρα υποβολής υποψηφιοτήτων για το Βραβείο Ευαισθητοποίησης Mark Heaney και το Βραβείο Πρωταθλητή Κοινότητας. \n\nΥποβάλετε τις υποψηφιότητές σας εδώ.\n\nΒραβείο ευαισθητοποίησης Mark Heaney. Υποδείξτε έναν επαγγελματία ιατρό που εργάζεται για τη βελτίωση της ζωής των ασθενών με ECD\, ευαισθητοποιώντας το ιατρικό επάγγελμα για την ασθένεια. \nΒραβείο Κοινοτικού Πρωταθλητή. Υποδείξτε οποιονδήποτε (ασθενή\, φροντιστή\, επαγγελματία υγείας\, φίλο κ.λπ.) που έχει αφιερώσει εθελοντικά το χρόνο του για να βοηθήσει στη βελτίωση της ζωής όλων όσων επηρεάζονται από το ECD. \n\n\n\nΕπικοινωνία:\nErdheim-Chester Disease Global Alliance\nEmail: support@erdheim-chester.org \nΑφίσα ασθενούς – Υποβολές\nΗ 1η Φεβρουαρίου 2026 είναι η τελευταία ημέρα για την ολοκλήρωση μιας Αφίσας Ασθενούς για έκθεση στη Συγκέντρωση Ασθενών & Οικογενειών. Παρακαλούμε υποβάλετε τις πληροφορίες της αφίσας σας εδώ! \nΤαξιδιωτικές υποτροφίες\nΤαξιδιωτική βοήθεια – Το Ταμείο Ταξιδιωτικής Βοήθειας του Glenn Padnick Τώρα γίνονται δεκτές αιτήσεις για το συνέδριο της ECDGA 2026. \nΟ Glenn Padnick έζησε μια γεμάτη και σημαντική ζωή\, ενώ αντιμετώπιζε τη νόσο Erdheim-Chester (ECD) για δεκαετίες. Από το 2011 έως το 2022\, υπηρέτησε με ακλόνητη αφοσίωση στο Διοικητικό Συμβούλιο της Παγκόσμιας Συμμαχίας ECD\, διασφαλίζοντας πάντα ότι οι φωνές και οι ανάγκες των ασθενών παρέμεναν στο επίκεντρο κάθε απόφασης. \nΠρος τιμήν της κληρονομιάς του Glenn στην υπηρεσία και τη συμπόνια\, η οικογένειά του δημιούργησε γενναιόδωρα το Ταμείο Ταξιδιών Μνήμης Glenn Padnick. Αυτό το ταμείο παρέχει οικονομική βοήθεια για να βοηθήσει ασθενείς\, φροντιστές και επαγγελματίες του ιατρικού κλάδου να συμμετάσχουν στο ετήσιο συνέδριο ECD για όσους δεν θα μπορούσαν διαφορετικά να συμμετάσχουν λόγω οικονομικών περιορισμών. \nΟι αιτήσεις για ταξιδιωτική βοήθεια για το Συνέδριο ECD 2026 είναι πλέον ανοικτές. Η χρηματοδότηση είναι περιορισμένη και προτεραιότητα θα δοθεί σε άτομα που δεν έχουν συμμετάσχει ποτέ στο παρελθόν στην εκδήλωση. Στόχος μας είναι να καταστήσουμε αυτή την ευκαιρία διαθέσιμη σε όσο το δυνατόν περισσότερα μέλη της κοινότητας με τους διαθέσιμους πόρους. \nΠροθεσμία υποβολής αιτήσεων: Ειδοποιήσεις για την απονομή: Το αργότερο την 1η Μαρτίου 2026 \nΚάντε αίτηση εδώ: Glenn Padnick Memorial Travel Fund Request. \nΞενοδοχείο και πληροφορίες ταξιδιού για το συνέδριο\nΞενοδοχείο συνεδρίων\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nΤηλ: +1 (659) 251-1934 \nΈνα μπλοκ δωματίων έχει δεσμευτεί στο Hilton Birmingham at UAB για τους συμμετέχοντες στο συνέδριο.\nΤα δωμάτια πρέπει να έχουν κρατηθεί έως τις 6 Απριλίου 2026 για να λάβετε την ομαδική τιμή. \nΚάντε κράτηση δωματίου \nΕάν αντιμετωπίζετε προβλήματα με την κράτηση του δωματίου σας\, παρακαλούμε επικοινωνήστε με τον Simon Hill στο Hilton Birmingham Downtown. Ο αριθμός του είναι 205-910-1970 και το email του είναι simon.hill@hiltoncom. \nΜεταφορά αεροδρομίου\nΔιεθνές Αεροδρόμιο Birmingham-Shuttlesworth (BHM)\nΗ δωρεάν υπηρεσία μεταφοράς από το αεροδρόμιο του Μπέρμιγχαμ προς το ξενοδοχείο παρέχεται απευθείας από το Hilton Downtown at UAB. \nΓια να χρησιμοποιήσετε το λεωφορείο: \n\nΠαραλάβετε τις αποσκευές σας.\nΚαλέστε το ξενοδοχείο στο 205-933-9000 για να ζητήσετε το λεωφορείο.\nΠροχωρήστε στην πόρτα #4L και περιμένετε το λεωφορείο με την ένδειξη “Hilton”.\n\nΤαξιδεύοντας μέσω Ατλάντα\nΤο Διεθνές Αεροδρόμιο Hartsfield-Jackson της Ατλάντα (ATL) απέχει περίπου 3 ώρες από το Μπέρμιγχαμ και προσφέρει απευθείας διεθνείς πτήσεις προς τις περισσότερες χώρες. Για τους ταξιδιώτες που φτάνουν μέσω του ATL\, διατίθενται υπηρεσίες μεταφοράς με λεωφορείο μεταξύ του αεροδρομίου της Ατλάντα και του Μπέρμιγχαμ. \nΣύνδεσμος Υπηρεσίας Μεταφοράς \nΕγγραφή \nΟι Χορηγοί μας\nΑυτή η συνάντηση καθίσταται δυνατή χάρη στον χορηγό μας\, Πατέρα Charles Balnaves από τη Μελβούρνη της Αυστραλίας\, ο οποίος υποστηρίζει αυτή την εκδήλωση στη μνήμη της εκλιπούσας συζύγου του\, Tanya. Είμαστε ευγνώμονες για τη συνεχή\, γενναιόδωρη χορηγία του Πατέρα Charles. Εκτιμούμε επίσης την υποστήριξη των ARUP Laboratories.\n  URL:https://www.erdheim-chester.org/event/11%ce%b7-%ce%b5%cf%84%ce%ae%cf%83%ce%b9%ce%b1-%cf%83%cf%85%ce%b3%ce%ba%ce%ad%ce%bd%cf%84%cf%81%cf%89%cf%83%ce%b7-%ce%b1%cf%83%ce%b8%ce%b5%ce%bd%cf%8e%ce%bd-%ce%ba%ce%b1%ce%b9-%ce%bf%ce%b9%ce%ba%ce%bf/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, AL\, 35205\, United States CATEGORIES:ECD Συγκέντρωση ασθενών & οικογενειών,Προτεινόμενο ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Patient-Family-Gathering-hd-v2.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260429 DTEND;VALUE=DATE:20260501 DTSTAMP:20260410T173705Z CREATED:20251030T142537Z LAST-MODIFIED:20260410T173705Z UID:10000958-1777420800-1777593599@www.erdheim-chester.org SUMMARY:11वीं वार्षिक ईसीडी रोगी एवं परिवार सभा - बर्मिंघम 2026 DESCRIPTION:एर्डहेम-चेस्टर डिजीज ग्लोबल अलायंस ने 2026 रोगी एवं परिवार सम्मेलन की घोषणा की। \nबर्मिंघम\, एएल – एर्डहेम-चेस्टर डिजीज ग्लोबल अलायंस (ईसीडीजीए) और यूएबी स्कूल ऑफ मेडिसिन मरीजों\, परिवारों\, स्वास्थ्य पेशेवरों और शोधकर्ताओं को तारीख को याद रखने के लिए आमंत्रित करता है। \n\nरोगी एवं परिवार सभा (पीएफजी): 29-30 अप्रैल\, 2026\n\nबुधवार\, 29 अप्रैल 2026\nमिलना और अभिवादन: दोपहर 3:00 बजे-5:00 बजे\nस्थान: Hilton at UAB Downtown \nगुरुवार\, 30 अप्रैल 2026\nरोगी और परिवार की सभा: सुबह 8:00 बजे-दोपहर 4:30 बजे\nस्थान: Marnix E. Heersink Conference Center\, University of Alabama at Birmingham \nउत्सव रात्रिभोज: शाम 6:00 बजे-8:00 बजे\nस्थान: Hilton at UAB Downtown \nयह कार्यक्रम वैश्विक एर्डहेम-चेस्टर रोग समुदाय को अग्रणी चिकित्सा विशेषज्ञों के साथ एक मंच पर लाएगा\, ताकि नवीनतम शोध\, नैदानिक ​​अंतर्दृष्टि और सामुदायिक संसाधनों को साझा किया जा सके। उपस्थित लोग शैक्षिक सत्र\, साथियों से जुड़ने के अवसर\, तथा उभरते उपचारों और रोगी देखभाल पर अद्यतन जानकारी की अपेक्षा कर सकते हैं। \nहोटल और कार्यक्रम की मुख्य विशेषताओं के बारे में आगे की जानकारी आगामी महीनों में जारी की जाएगी। \nकार्यसूची\n\n\n\n\n TimeAllocated minutes (510 min total)Presentation Subject Possibilities (Actual Titles to be Provided by Presenters)PresenterSession Description\n\n\n\n\n 8:00 AM30Registration & Light Breakfast\n\n\n 8:30 AM15Welcome to Birmingham & PFG MeetingGaurav Goyal\, MDWelcome to the 11th Annual Erdheim-Chester Disease International Conference! Introductions to Birmingham\, UAB and the ECD Global Alliance.\n\n\n 8:45 AM15Manifestations of histiocytosis in adultsMatthew Collin\, MD\, PhDLearn about the difference types of adult histiocytic disorders. How are they different? How are they the same? What have we learned recently that makes us believe they are more alike than they once were.\n\n\n 9:00 AM15Histiocytosis at the Cellular LevelAstrid van Halteren\, PhDThis presentation will zoom into the different cell types which can be found in the bone marrow\, blood and tissues of patients diagnosed with histiocytosis\n\n\n 9:15 AM15ECD/Histio Treatment OptionsSam Reynolds\, MDECD/Histio Treatment Options (Current & on the horizon)\n\n\n 9:30 AM15Tagreted Therapy: The Good\, the Bad\, and the UnaffordableDaniel Sokolowski\, PharmDOverview of targeted treatments for histiocytosis and management of their adverse effects.\n\n\n 9:45 AM20BreakN/A\n\n\n 10:05 AM15Advancing treatment for histiocytic neurodegeneration through patient specific modelingNicole Coufal\, MD\, PhDThe importance of patient samples to the science\, and the importance of pilot funding and where we hope to take it in the future.\n\n\n 10:20 AM15What should I know about ECD Treatment and My Heart? Potential cardiac side effects of ECD treatment.Carrie Lenneman\, MD\, MSCIDiscuss common medication used in treatment of ECD . Review  potential cardiac side effects and management strategies of ECD treatment.\n\n\n 10:35 AM15ECD on the BrainEli Diamond\, MDDiscussion of ECD effects on the brain.\n\n\n 10:50 AM15Endocrine Manifestations of Erdheim-Chester DiseaseAlexandra Dodd\, MDUnderstand endocrine manifestations of ECD including effects on the pituitary gland. Understand the treatments for endocrine disorders related to ECD.\n\n\n 11:05 AM40Expert Q&AJulien Haroche\, MD\, PhD\nEli Diamond\, MD\nRonald Go\, MD\nGaurav Goyal\, MD (Moderator)Ask your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research.\n\n\n 11:45 AM15PicturesN/A\n\n\n 12:00 – 1:00pm60LunchN/A\n\n\n 1:00 PM20Research Opportunities (Panel Discussion - 5 min each)Eli Diamond\, MD (Registry)\nGaurav Goyal\, MD (Survivorship)\nJithma Abeykoon\, MD (CSF1R\, ERK)\nMatthew Collins\, MD\, PhDHear the answers from ECD Medical experts about the open research opportunities. Hear up-to-date answers from those who are doing ECD research.\n\n\n 1:20 PM20Expert Question & Answer PanelGaurav Goyal\, MD\nEli Diamond\, MD\nJithme Abeykoon\, MD\nMatthew Collins\, MD\, PhDAsk your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research. Don’t be shy\, ask your questions about ECD in general! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n 1:40 PM60Breakout SessionsKevin O'Brien\, RN\, MS-CRNP (patients) \n\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM (Caregivers)Breakout Session:\n\n- Patients: Personal Challenges in Living with Erdheim-Chester Disease\n\n- Cargivers & Family: Addressing YOUR Emotional Needs\n\n\n 2:40 PM20BreakN/A\n\n\n 3:00 PM15General medical management for ECDKevin O'Brien\, RN\, MS-CRNPHighlighting the importance of managing ongoing general medical problems. For example\, hypertension\, diabetes\, weight\, cholesterol levels\, etc. These uncontrolled medical problems can compound overall disease burden.\n\n\n 3:15 PM15Emotional and Cognitive Changes in ECDSylvia Huang\, PhD\, MA\, MEd\, FAAHPMLiving with Erdheim-Chester Disease can bring emotional\, cognitive\, and fatigue-related changes that are real and often invisible. This session offers understanding\, reassurance\, and practical guidance to help patients and families make sense of these experiences. Participants will learn about supportive strategies and resources that promote resilience\, wellbeing\, and hope.\n\n\n 3:30 PM15Fatigue and Pain in Erdheim-Chester Disease: Root Causes and Practical Strategies for Energy\, Relief\, and ResilienceRichard Taylor\, PhD\, DNP\, CRNP\, APN-BCThis session is designed to empower patients and caregivers by unpacking the root causes of fatigue and pain in Erdheim-Chester Disease (ECD).\n\nThe goal is to offer meaningful\, evidence-informed tools to reduce suffering\, build resilience\, and improve energy\, mobility\, and quality of life.\n\n\n 3:45 PM15Movement is MedicineElizabeth Bohorfoush\, DPTPatients and caregivers receive guidance through gentle\, low-level exercises to help reduce pain\, build strength\, improve posture\, and encourage activity.\n\n\n 4:00 PM20Expert Question & Answer PanelKevin O'Brien\, RN\, MS-CRNP\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM\nRichard Taylor\, PhD\, DNP\, CRNP\, APN-BC\nElizabeth Bohorfoush\, DPTAsk your questions and hear the answers from the experts. Don’t be shy\, ask your questions! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n 4:20 PM10ECDGA CloseJerome Henson\, ED (ECDGA)Learn more about the ECD Global Alliance. Hear why the organization was created and what has been accomplished as a result. Learn how the organization is able to do its work and how you can become more involved in improving the lives of all who have been impacted by Erdheim-Chester Disease.\n\n\n 510\n\n\n\n\nएजेंडा डाउनलोड करें \nपंजीकरण करवाना \nनोट: 1 फ़रवरी से पहले पंजीकरण कराएँ और शुरुआती पंजीकरण शुल्क का लाभ उठाएँ! 100 अमेरिकी डॉलर बचाएँ और सिर्फ़ 100 अमेरिकी डॉलर में पंजीकरण करें! \nमार्क हेनी जागरूकता पुरस्कार और सामुदायिक चैंपियन पुरस्कार\n1 फरवरी\, 2026 – मार्क हेनी जागरूकता पुरस्कार और सामुदायिक चैंपियन पुरस्कार के लिए अपना नामांकन प्रस्तुत करने का अंतिम दिन। \n\nकृपया अपना नामांकन प्रस्तुत करें यहाँ ।\n\nमार्क हेनी जागरूकता पुरस्कार। ऐसे चिकित्सा पेशेवर को नामांकित करें जो चिकित्सा पेशे में इस बीमारी के बारे में जागरूकता लाकर ईसीडी रोगियों के जीवन को बेहतर बनाने के लिए काम कर रहा हो। \nसामुदायिक चैंपियन पुरस्कार। किसी भी व्यक्ति (रोगी\, देखभालकर्ता\, चिकित्सा पेशेवर\, मित्र\, आदि) को नामांकित करें जिसने ईसीडी से प्रभावित सभी लोगों के जीवन को बेहतर बनाने में मदद करने के लिए अपना समय स्वेच्छा से दिया हो। \n\n\n\nसंपर्क:\nErdheim-Chester Disease Global Alliance\nईमेल: support@erdheim-chester.org \nरोगी पोस्टर – प्रस्तुतियाँ\n1 फरवरी 2026\, रोगी और परिवार की सभा में प्रदर्शन के लिए रोगी पोस्टर पूरा करने का अंतिम दिन है। कृपया अपनी पोस्टर जानकारी यहाँ जमा करें! \nयात्रा छात्रवृत्ति\nयात्रा सहायता – ग्लेन पैडनिक मेमोरियल ट्रैवल फंड अब 2026 ईसीडीजीए सम्मेलन के लिए आवेदन स्वीकार कर रहा है। \nग्लेन पैडनिक ने दशकों तक एर्डहाइम-चेस्टर रोग (ईसीडी) से जूझते हुए एक पूर्ण और प्रभावशाली जीवन जिया। 2011 से 2022 तक\, उन्होंने ईसीडी ग्लोबल अलायंस के निदेशक मंडल में अटूट समर्पण के साथ काम किया और हमेशा यह सुनिश्चित किया कि हर निर्णय में मरीजों की आवाज़ और ज़रूरतें केंद्र में रहें। \nग्लेन की सेवा और करुणा की विरासत के सम्मान में\, उनके परिवार ने उदारतापूर्वक ग्लेन पैडनिक मेमोरियल ट्रैवल फंड की स्थापना की। यह फंड उन मरीज़ों\, देखभाल करने वालों और चिकित्सा पेशेवरों को वार्षिक ईसीडी सम्मेलन में भाग लेने में मदद करने के लिए वित्तीय सहायता प्रदान करता है जो आर्थिक तंगी के कारण इसमें भाग नहीं ले पाते। \n2026 ईसीडी सम्मेलन के लिए यात्रा सहायता हेतु आवेदन अब खुले हैं। धनराशि सीमित है\, और उन व्यक्तियों को प्राथमिकता दी जाएगी जिन्होंने पहले कभी इस कार्यक्रम में भाग नहीं लिया है। हमारा लक्ष्य उपलब्ध संसाधनों के साथ इस अवसर को अधिक से अधिक समुदाय के सदस्यों तक पहुँचाना है। \nआवेदन की अंतिम तिथि: 1 फ़रवरी\, 2026 पुरस्कार अधिसूचनाएँ: 1 मार्च\, 2026 से पहले \nयहां आवेदन करें: ग्लेन पैडनिक मेमोरियल यात्रा निधि अनुरोध। \nसम्मेलन के लिए होटल और यात्रा संबंधी जानकारी\nसम्मेलन होटल\nहिल्टन बर्मिंघम एट यूएबी\n 808 20वीं स्ट्रीट साउथ\n बर्मिंघम\, एएल 35205\n फ़ोन: +1 (659) 251-1934 \nसम्मेलन में भाग लेने वालों के लिए यूएबी स्थित हिल्टन बर्मिंघम होटल में कुछ कमरे आरक्षित किए गए हैं।\nसमूह दर का लाभ उठाने के लिए कमरे 6 अप्रैल\, 2026 तक आरक्षित किए जाने चाहिए। \nकमरा बुक करें \nयदि आपको अपना कमरा बुक करने में कोई समस्या आती है\, तो कृपया हिल्टन बर्मिंघम डाउनटाउन में साइमन हिल से संपर्क करें। उनका नंबर 205-910-1970 है और उनका ईमेल simon.hill@hiltoncom है। \nहवाई अड्डे का परिवहन\nबर्मिंघम-शटल्सवर्थ अंतर्राष्ट्रीय हवाई अड्डा (बीएचएम)\n बर्मिंघम हवाई अड्डे से होटल तक मानार्थ शटल सेवा उपलब्ध है और यह सेवा सीधे हिल्टन डाउनटाउन एट यूएबी द्वारा प्रदान की जाती है। \nशटल का उपयोग करने के लिए: \n\nअपना सामान ले लीजिए।\nशटल सेवा का अनुरोध करने के लिए होटल को 205-933-9000 पर कॉल करें।\nगेट नंबर 4L की ओर बढ़ें और “हिल्टन” लिखी बस का इंतजार करें।\n\nअटलांटा होते हुए यात्रा करना\nहार्ट्सफील्ड-जैक्सन अटलांटा अंतर्राष्ट्रीय हवाई अड्डा (एटीएल) बर्मिंघम से लगभग 3 घंटे की दूरी पर है और यहाँ से अधिकांश देशों के लिए सीधी अंतर्राष्ट्रीय उड़ानें उपलब्ध हैं। एटीएल के माध्यम से आने वाले यात्रियों के लिए अटलांटा हवाई अड्डे और बर्मिंघम के बीच शटल सेवा उपलब्ध है। \nशटल सेवा लिंक \nपंजीकरण करवाना \nहमारे प्रायोजक\nयह बैठक हमारे प्रायोजक\, मेलबर्न\, ऑस्ट्रेलिया के फादर चार्ल्स बालनेव्स द्वारा संभव बनाई गई है\, जो अपनी दिवंगत पत्नी तान्या की स्मृति में इस कार्यक्रम का समर्थन करते हैं। हम फादर चार्ल्स की निरंतर\, उदार प्रायोजकता के लिए आभारी हैं। हम ARUP Laboratories के समर्थन की भी सराहना करते हैं।\n  URL:https://www.erdheim-chester.org/event/11%e0%a4%b5%e0%a5%80%e0%a4%82-%e0%a4%b5%e0%a4%be%e0%a4%b0%e0%a5%8d%e0%a4%b7%e0%a4%bf%e0%a4%95-%e0%a4%88%e0%a4%b8%e0%a5%80%e0%a4%a1%e0%a5%80-%e0%a4%b0%e0%a5%8b%e0%a4%97%e0%a5%80-%e0%a4%8f%e0%a4%b5/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, AL\, 35205\, United States CATEGORIES:ECD रोगी एवं परिवार सभा,प्रदर्शित ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Patient-Family-Gathering-hd-v2.png END:VEVENT END:VCALENDAR