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;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 BEGIN:VEVENT DTSTART;VALUE=DATE:20260429 DTEND;VALUE=DATE:20260501 DTSTAMP:20260410T173705Z CREATED:20251030T142537Z LAST-MODIFIED:20260410T173705Z UID:10000966-1777420800-1777593599@www.erdheim-chester.org SUMMARY:11e réunion annuelle des patients et de leur famille sur les ECD - Birmingham 2026 DESCRIPTION:L’Alliance mondiale pour la maladie d’Erdheim-Chester annonce le rassemblement 2026 des patients et des familles. \nBirmingham\, AL – L’Alliance mondiale pour la maladie d’Erdheim-Chester (ECDGA) et l’École de médecine de l’UAB invitent les patients\, les familles\, les professionnels de la santé et les chercheurs à réserver cette date. \n\nRassemblement des patients et des familles (PFG) : 29-30 avril 2026\n\nMercredi 29 avril 2026\nRencontre : 15h00-17h00\nLieu : Hilton at UAB Downtown \nJeudi 30 avril 2026\nRassemblement des patients et des familles : 8h00-16h30\nLieu : Marnix E. Heersink Conference Center at the University of Alabama at Birmingham \nDîner de célébration : 18h00-20h00\nLieu : Hilton at UAB Downtown \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 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\nTélécharger l’ordre du jour \nRegistre \nNOTE : Inscrivez-vous avant le 1er février pour bénéficier du tarif préférentiel ! Economisez 100 USD et inscrivez-vous pour seulement 100 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\nContact :\nErdheim-Chester Disease Global Alliance\nE-mail : support@erdheim-chester.org \nPoster patient – Soumissions\nLe 1er février 2026 est le dernier jour pour remplir une affiche de patient destinée à être exposée lors du rassemblement des patients et des familles. Veuillez soumettre les informations de votre poster ici ! \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 vers le service de navette \nRegistre \nNos sponsors\nCette réunion est rendue possible grâce à notre sponsor\, le père Charles Balnaves de Melbourne\, en Australie\, qui soutient cet événement en mémoire de sa défunte épouse\, Tanya. Nous sommes reconnaissants au père Charles pour son parrainage continu et généreux. Nous apprécions également le soutien d’ARUP Laboratories.\n  URL:https://www.erdheim-chester.org/event/11e-reunion-annuelle-des-patients-et-de-leur-famille-sur-les-ecd-birmingham-2026/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, AL\, 35205\, United States CATEGORIES:ECD Réunion des patients et des familles,En vedette 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:10000959-1777420800-1777593599@www.erdheim-chester.org SUMMARY:מפגש מטופלים ומשפחות ECD השנתי ה-11 - ברמינגהם 2026 DESCRIPTION:הברית הגלובלית למחלת ארדהיים-צ'סטר מכריזה על מפגש חולים ומשפחות לשנת 2026. \nברמינגהם\, אלבמה – הברית הגלובלית למחלת ארדהיים-צ’סטר (ECDGA) ובית הספר לרפואה של אוניברסיטת אלבמה (UAB) מזמינים חולים\, משפחות\, אנשי מקצוע בתחום הבריאות וחוקרים לשמור את התאריך. \n\nמפגש מטופלים ומשפחות (PFG): 29-30 באפריל\, 2026\n\nיום רביעי\, 29 באפריל 2026\nמפגש היכרות: 15:00–17:00\nמיקום: Hilton at UAB Downtown \nיום חמישי\, 30 באפריל 2026\nמפגש חולים ומשפחות: 08:00–16:30\nמיקום: Marnix E. Heersink Conference Center באוניברסיטת אלבמה בברמינגהם \nארוחת ערב חגיגית: 18:00–20:00\nמיקום: Hilton at UAB Downtown \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 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\nהורדת סדר יום \nלִרְשׁוֹם \nהערה: הירשמו לפני ה-1 בפברואר כדי לנצל את עלות ההרשמה המוקדמת! חסכו 100 דולר והירשמו תמורת 100 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\nיצירת קשר:\nErdheim-Chester Disease Global Alliance\nדוא”ל: support@erdheim-chester.org \nפוסטר למטופלים – הגשות\n1 בפברואר 2026 הוא היום האחרון להגשת פוסטר חולים לתצוגה במפגש חולים ומשפחות. אנא הגש את פרטי הפוסטר שלך כאן! \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. \nהזמן 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 ההסעות \nלִרְשׁוֹם \nנותני החסות שלנו\nמפגש זה מתאפשר הודות לחסות של האב צ’רלס בלנייבס ממלבורן\, אוסטרליה\, התומך באירוע זה לזכרה של אשתו המנוחה\, טניה. אנו אסירי תודה על חסותו המתמשכת והנדיבה של האב צ’רלס. אנו מעריכים גם את התמיכה של מעבדות ARUP.\n  URL:https://www.erdheim-chester.org/event/%d7%9e%d7%a4%d7%92%d7%a9-%d7%9e%d7%98%d7%95%d7%a4%d7%9c%d7%99%d7%9d-%d7%95%d7%9e%d7%a9%d7%a4%d7%97%d7%95%d7%aa-ecd-%d7%94%d7%a9%d7%a0%d7%aa%d7%99-%d7%94-11-%d7%91%d7%a8%d7%9e%d7%99%d7%a0%d7%92%d7%94/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, AL\, 35205\, United States CATEGORIES:מוּבלָט,מפגש מטופלים ומשפחות ECD 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:10000960-1777420800-1777593599@www.erdheim-chester.org SUMMARY:11. jährliches ECD Patienten- und Familientreffen - Birmingham 2026 DESCRIPTION:Erdheim-Chester Disease Global Alliance kündigt Patienten- und Familientreffen für 2026 an. \nBirmingham\, AL – Die Erdheim-Chester Disease Global Alliance (ECDGA) und die UAB School of Medicine laden Patienten\, Familien\, medizinisches Fachpersonal und Forscher ein\, sich den Termin zu merken. \n\nPatienten- und Familientreffen (PFG): April 29-30\, 2026\n\nMittwoch\, 29. April 2026\nMeet and Greet: 15:00–17:00 Uhr\nOrt: Hilton at UAB Downtown \nDonnerstag\, 30. April 2026\nPatienten- & Familientreffen: 08:00–16:30 Uhr\nOrt: Marnix E. Heersink Conference Center at the University of Alabama at Birmingham \nFestliches Abendessen: 18:00–20:00 Uhr\nOrt: Hilton at UAB Downtown \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 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\nAgenda herunterladen \nRegistrieren Sie sich \nHINWEIS: Melden Sie sich vor dem 1. Februar an\, um von den Frühbucherpreisen zu profitieren! Sparen Sie $100 USD und registrieren Sie sich für nur $100 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\nKontakt:\nErdheim-Chester Disease Global Alliance\nE-Mail: support@erdheim-chester.org \nPatientenposter – Einreichungen\nDer 1. Februar 2026 ist der letzte Tag\, um ein Patienten-Poster für die Präsentation beim Patienten- & Familientreffen fertigzustellen. Bitte reichen Sie Ihre Posterinformationen hier ein! \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 \nRegistrieren Sie sich \nUnsere Sponsoren\nDieses Treffen wird durch unseren Sponsor\, Pater Charles Balnaves aus Melbourne\, Australien\, ermöglicht\, der diese Veranstaltung im Gedenken an seine verstorbene Frau Tanya unterstützt. Wir sind Pater Charles für sein fortgesetztes\, großzügiges Sponsoring dankbar. Wir wissen auch die Unterstützung von ARUP Laboratories zu schätzen.\n  URL:https://www.erdheim-chester.org/event/11-jaehrliches-ecd-patienten-und-familientreffen-birmingham-2026/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, AL\, 35205\, United States CATEGORIES:Ausgewählt,ECD Treffen von Patienten und Familien 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:20260410T173709Z CREATED:20251030T142537Z LAST-MODIFIED:20260410T173709Z UID:10000961-1777420800-1777593599@www.erdheim-chester.org SUMMARY:第 11 屆年度 ECD 患者和家庭聚會 - 伯明翰 2026 DESCRIPTION:埃爾德海姆-切斯特病全球聯盟宣布 2026 年患者和家屬聚會。 \n阿拉巴馬州伯明翰 — 埃德海姆-切斯特病全球聯盟 （ECDGA） 和 UAB 醫學院邀請患者、家屬、醫療保健專業人員和研究人員保存日期。 \n\n患者和家屬聚會 （PFG）：2026 年 4 月 29 日至 30 日\n\n2026 年 4 月 29 日（星期三）\n交流會：下午 3:00–下午 5:00\n地點：Hilton at UAB Downtown \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：阿拉巴馬大學伯明罕分校（University of Alabama at Birmingham）Marnix E. Heersink 會議中心 \n慶祝晚宴：下午 6:00–下午 8:00\n地點：Hilton at UAB Downtown \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 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\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 100 美元，註冊僅需 100 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聯絡方式：\nErdheim-Chester Disease Global Alliance\n電子郵件： support@erdheim-chester.org \n患者海報 – 提交\n2026 年 2 月 1 日為完成病友海報（Patient Poster）以供於病友與家屬聚會展示的最後期限。 請在此提交您的海報資訊！ \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接駁車服務連結 \n登記 \n我們的贊助商\n本次會議由我們的贊助者，來自澳洲墨爾本的 Charles Balnaves 神父促成，他為了紀念亡妻 Tanya 而支持本次活動。我們非常感謝 Charles 神父持續且慷慨的贊助。我們也對 ARUP 實驗室的支持表示感謝。\n  URL:https://www.erdheim-chester.org/event/%e7%ac%ac-11-%e5%b1%86%e5%b9%b4%e5%ba%a6-ecd-%e6%82%a3%e8%80%85%e5%92%8c%e5%ae%b6%e5%ba%ad%e8%81%9a%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\, AL\, 35205\, United States CATEGORIES:ECD 患者和家庭聚會,特色 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:10000962-1777420800-1777593599@www.erdheim-chester.org SUMMARY:11ª Reunião Anual de Pacientes e Familiares do ECD - Birmingham 2026 DESCRIPTION:A Erdheim-Chester Disease Global Alliance anuncia o Patient & Family Gathering de 2026. \nBirmingham\, AL – A Erdheim-Chester Disease Global Alliance (ECDGA) e a UAB School of Medicine convidam pacientes\, familiares\, profissionais da área de saúde e pesquisadores a reservar a data. \n\nEncontro de Pacientes e Familiares (PFG): 29 e 30 de abril de 2026\n\nQuarta-feira\, 29 de abril de 2026\nRecepção e boas-vindas: 15:00-17:00\nLocal: Hilton at UAB Downtown \nQuinta-feira\, 30 de abril de 2026\nEncontro de Pacientes e Familiares: 8:00-16:30\nLocal: Marnix E. Heersink Conference Center at the University of Alabama at Birmingham \nJantar de celebração: 18:00-20:00\nLocal: Hilton at UAB Downtown \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 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\nBaixar Agenda \nRegistro \nOBSERVAÇÃO: Inscreva-se antes de 1º de fevereiro para aproveitar o custo de inscrição antecipada! Economize US$ 100 e inscreva-se por apenas US$ 100! \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\nContato:\nErdheim-Chester Disease Global Alliance\nE-mail: support@erdheim-chester.org \nPôster do paciente – envios\n1º de fevereiro de 2026 é o último dia para concluir um Pôster do Paciente para exibição no Encontro de Pacientes e Familiares. Envie as informações do seu pôster aqui! \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 \nRegistro \nNossos Patrocinadores\nEsta reunião é tornada possível pelo nosso patrocinador\, o Padre Charles Balnaves de Melbourne\, Austrália\, que apoia este evento em memória de sua falecida esposa\, Tanya. Somos gratos pelo patrocínio contínuo e generoso do Padre Charles. Também agradecemos o apoio da ARUP Laboratories.\n  URL:https://www.erdheim-chester.org/event/11a-reuniao-anual-de-pacientes-e-familiares-do-ecd-birmingham-2026/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, AL\, 35205\, United States CATEGORIES:ECD Reunião de pacientes e familiares,Em destaque 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;TZID=America/Chicago:20260422T220000 DTEND;TZID=America/Chicago:20260422T230000 DTSTAMP:20260406T175610Z CREATED:20260406T175610Z LAST-MODIFIED:20260406T175610Z UID:10001416-1776895200-1776898800@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-11/ 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:20260421T110000 DTEND;TZID=America/Chicago:20260421T120000 DTSTAMP:20260406T175329Z CREATED:20260406T175329Z LAST-MODIFIED:20260406T175329Z UID:10001382-1776769200-1776772800@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-8/ 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:20260416T110000 DTEND;TZID=America/Chicago:20260416T120000 DTSTAMP:20260406T175431Z CREATED:20260406T175431Z LAST-MODIFIED:20260406T175431Z UID:10001394-1776337200-1776340800@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-10/ 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:20260414T130000 DTEND;TZID=America/Chicago:20260414T140000 DTSTAMP:20260406T175156Z CREATED:20260406T175156Z LAST-MODIFIED:20260406T175156Z UID:10001381-1776171600-1776175200@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-11/ 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:20260414T110000 DTEND;TZID=America/Chicago:20260414T120000 DTSTAMP:20260201T213033Z CREATED:20260201T213033Z LAST-MODIFIED:20260201T213033Z UID:10001275-1776164400-1776168000@www.erdheim-chester.org SUMMARY:Chat i det italienske samfunnet DESCRIPTION:Registrer deg i dag \nChattene er åpne for alle diskusjonstemaer innenfor rimelighetens grenser. ECD Ofte diskuteres temaer som diagnoser\, behandlinger\, tester\, kunnskapsrike leger\, symptomer\, bivirkninger av behandlingen og noen ganger bare vennskapelige diskusjoner om hyggelige ting som skjer i deltakernes liv. De fleste som deltar på møtene\, har funnet nye kontakter og fortsetter å korrespondere utenom chatteøktene. Møtene gir også en støttestruktur for dem som er interessert i å lære så mye som mulig om ECD og gi hverandre gjensidig støtte. \nVennligst les våre retningslinjer for virtuell deltakelse før du deltar på et møte eller webinar på ECD Global Alliance. \nMERK: Sjekk tidssonen din her: Tidssoneomregner. \nDet vil ikke være noen medisinsk fagperson som bistår i disse samtalene. Hver pasient er unik\, og vi kan ikke gi medisinske råd her; vi oppfordrer til å dele alle ideer med leger. Vennligst les våre retningslinjer for virtuell deltakelse. URL:https://www.erdheim-chester.org/event/chat-i-det-italienske-samfunnet-3/ CATEGORIES:Chatter i det italienske samfunnet ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Italian-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260414T110000 DTEND;TZID=America/Chicago:20260414T120000 DTSTAMP:20260201T213033Z CREATED:20260201T213033Z LAST-MODIFIED:20260201T213033Z UID:10001268-1776164400-1776168000@www.erdheim-chester.org SUMMARY:צ'אט קהילתי איטלקי DESCRIPTION:הירשמו עוד היום \nצ’אטים פתוחים לכל נושא דיון בגבולות הסביר. נושאים הנדונים לעתים קרובות כוללים סוגיות באבחון ECD \, טיפולים\, בדיקות\, רופאים בעלי ידע\, תסמינים\, תופעות לוואי של טיפולים\, ולפעמים סתם דיונים ידידותיים על דברים נעימים שקורים בחייהם של המשתתפים. רוב המשתתפים במפגשים מצאו קשרים וממשיכים להתכתב מחוץ למפגשי הצ’אט. המפגשים מספקים גם מבנה תמיכה לאלו המעוניינים ללמוד כמה שיותר על ECD ולספק תמיכה הדדית זה לזה. \nאנא קראו את מדיניות ההשתתפות הווירטואלית שלנו לפני הצטרפות לפגישה או לוובינר של ECD Global Alliance. \nהערה: בדוק את אזור הזמן שלך כאן: ממיר אזורי זמן . \nלא יהיה איש מקצוע רפואי שיסייע בשיחות אלו. כל מטופל הוא ייחודי ולא ניתן להציע כאן ייעוץ רפואי; אנו מעודדים לשתף את כל הרעיונות עם רופאים. אנא קראו את מדיניות ההשתתפות הווירטואלית שלנו. URL:https://www.erdheim-chester.org/event/%d7%a6%d7%90%d7%98-%d7%a7%d7%94%d7%99%d7%9c%d7%aa%d7%99-%d7%90%d7%99%d7%98%d7%9c%d7%a7%d7%99-3/ CATEGORIES:צ'אטים בקהילה האיטלקית ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Italian-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260414T110000 DTEND;TZID=America/Chicago:20260414T120000 DTSTAMP:20260201T213033Z CREATED:20260201T213033Z LAST-MODIFIED:20260201T213033Z UID:10001276-1776164400-1776168000@www.erdheim-chester.org SUMMARY:Chat della comunità italiana DESCRIPTION:Registrati oggi \nLe chat sono aperte a qualsiasi argomento di discussione\, purché ragionevole. Spesso gli argomenti discussi includono i problemi di diagnosi di ECD\, i trattamenti\, gli esami\, i medici competenti\, i sintomi\, gli effetti collaterali dei trattamenti e\, a volte\, semplicemente discussioni amichevoli sulle cose piacevoli che accadono nella vita dei partecipanti. La maggior parte di coloro che partecipano alle sessioni hanno trovato dei legami e continuano a corrispondere anche al di fuori delle sessioni di chat. Gli incontri forniscono anche una struttura di supporto per coloro che sono interessati a imparare il più possibile su ECD e a darsi reciproco sostegno. \nPrima di partecipare a una riunione o a un webinar di ECD Global Alliance\, leggi la nostra Politica di partecipazione virtuale. \nNOTA: Controlla il tuo fuso orario qui: Convertitore di fuso orario. \nNon ci sarà un medico professionista ad assistere a queste chiamate. Ogni paziente è unico e non è possibile offrire consigli medici in questa sede; incoraggiamo tutte le idee a essere condivise con i medici. Leggi la nostra Politica di partecipazione virtuale. URL:https://www.erdheim-chester.org/event/chat-della-comunita-italiana-3/ CATEGORIES:Chat della comunità italiana ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Italian-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260414T110000 DTEND;TZID=America/Chicago:20260414T120000 DTSTAMP:20260201T213033Z CREATED:20260201T213033Z LAST-MODIFIED:20260201T213033Z UID:10001269-1776164400-1776168000@www.erdheim-chester.org SUMMARY:Ιταλική Κοινότητα Chat DESCRIPTION:Εγγραφείτε σήμερα \nΟι συνομιλίες είναι ανοιχτές για οποιοδήποτε θέμα συζήτησης εντός λογικών ορίων. Συχνά τα θέματα που συζητούνται περιλαμβάνουν θέματα διάγνωσης ECD\, θεραπείες\, εξετάσεις\, ενημερωμένους γιατρούς\, συμπτώματα\, παρενέργειες της θεραπείας και μερικές φορές απλά φιλικές συζητήσεις για ευχάριστα πράγματα που συμβαίνουν στη ζωή των συμμετεχόντων. Οι περισσότεροι που παρακολουθούν τις συνεδρίες έχουν βρει συνδέσεις και συνεχίζουν να αλληλογραφούν και εκτός των συνεδριών συνομιλίας. Οι συναντήσεις παρέχουν επίσης μια δομή υποστήριξης για όσους ενδιαφέρονται να μάθουν όσο το δυνατόν περισσότερα για το ECD και να παρέχουν αμοιβαία υποστήριξη ο ένας στον άλλο. \nΠαρακαλούμε διαβάστε την Πολιτική Εικονικής Συμμετοχής πριν συμμετάσχετε σε μια συνάντηση ή διαδικτυακό σεμινάριο της ECD Global Alliance. \nΣΗΜΕΙΩΣΗ: Ελέγξτε τη ζώνη ώρας σας εδώ: Μετατροπέας Ζώνης Ώρας. \nΔεν θα υπάρχει κάποιος επαγγελματίας ιατρός που θα βοηθάει σε αυτές τις κλήσεις. Κάθε ασθενής είναι μοναδικός και εδώ δεν μπορούν να δοθούν ιατρικές συμβουλές- ενθαρρύνουμε όλες τις ιδέες να μοιράζονται με τους γιατρούς. Παρακαλούμε διαβάστε την Πολιτική Εικονικής Συμμετοχής μας. URL:https://www.erdheim-chester.org/event/%ce%b9%cf%84%ce%b1%ce%bb%ce%b9%ce%ba%ce%ae-%ce%ba%ce%bf%ce%b9%ce%bd%cf%8c%cf%84%ce%b7%cf%84%ce%b1-chat-3/ CATEGORIES:Συζητήσεις της ιταλικής κοινότητας ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Italian-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260414T110000 DTEND;TZID=America/Chicago:20260414T120000 DTSTAMP:20260201T213033Z CREATED:20260201T213033Z LAST-MODIFIED:20260201T213033Z UID:10001277-1776164400-1776168000@www.erdheim-chester.org SUMMARY:इतालवी समुदाय चैट DESCRIPTION:आज ही पंजीकृत करें \nचैट किसी भी चर्चा विषय के लिए खुली हैं। अक्सर चर्चा किए जाने वाले विषयों में ECD निदान मुद्दे\, उपचार\, परीक्षण\, जानकार डॉक्टर\, लक्षण\, उपचार के दुष्प्रभाव और कभी-कभी प्रतिभागियों के जीवन में होने वाली सुखद चीजों के बारे में दोस्ताना चर्चा शामिल होती है। सत्र में भाग लेने वाले अधिकांश लोगों ने कनेक्शन पाया है और चैट सत्रों के बाहर भी पत्राचार करना जारी रखते हैं। बैठकें उन लोगों के लिए एक सहायता संरचना भी प्रदान करती हैं जो ECD के बारे में जितना संभव हो उतना सीखने और एक-दूसरे को पारस्परिक सहायता प्रदान करने में रुचि रखते हैं। \nकृपया ECD ग्लोबल अलायंस की बैठक या वेबिनार में शामिल होने से पहले हमारी वर्चुअल भागीदारी नीति पढ़ें। \nनोट: अपना समय क्षेत्र यहां जांचें: समय क्षेत्र परिवर्तक । \nइन कॉल्स में सहायता करने के लिए कोई मेडिकल प्रोफेशनल नहीं होगा। हर मरीज़ अलग होता है और यहाँ मेडिकल सलाह नहीं दी जा सकती; हम सभी विचारों को डॉक्टरों के साथ साझा करने के लिए प्रोत्साहित करते हैं। कृपया हमारी वर्चुअल भागीदारी नीति पढ़ें। URL:https://www.erdheim-chester.org/event/%e0%a4%87%e0%a4%a4%e0%a4%be%e0%a4%b2%e0%a4%b5%e0%a5%80-%e0%a4%b8%e0%a4%ae%e0%a5%81%e0%a4%a6%e0%a4%be%e0%a4%af-%e0%a4%9a%e0%a5%88%e0%a4%9f-3/ CATEGORIES:इतालवी समुदाय चैट ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Italian-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260414T110000 DTEND;TZID=America/Chicago:20260414T120000 DTSTAMP:20260201T213033Z CREATED:20260201T213033Z LAST-MODIFIED:20260201T213033Z UID:10001270-1776164400-1776168000@www.erdheim-chester.org SUMMARY:Italienisch-Community-Chat DESCRIPTION:Heute registrieren \nDie Chats sind offen für jedes Diskussionsthema\, sofern es sinnvoll ist. Zu den häufig diskutierten Themen gehören ECD Diagnosen\, Behandlungen\, Tests\, sachkundige Ärzte\, Symptome\, Nebenwirkungen der Behandlung und manchmal auch nur freundliche Gespräche über angenehme Dinge im Leben der Teilnehmer. Die meisten\, die an den Sitzungen teilnehmen\, haben Kontakte geknüpft und unterhalten sich auch außerhalb der Chat-Sitzungen. Die Treffen bieten auch eine Unterstützungsstruktur für diejenigen\, die daran interessiert sind\, so viel wie möglich über ECD zu erfahren und sich gegenseitig zu unterstützen. \nBitte lesen Sie unsere Richtlinien zur virtuellen Teilnahme\, bevor Sie an einem ECD Global Alliance Meeting oder Webinar teilnehmen. \nHINWEIS: Prüfen Sie Ihre Zeitzone hier: Zeitzonen-Konverter. \nEs wird kein medizinisches Fachpersonal bei diesen Anrufen assistieren. Jeder Patient ist einzigartig und wir können hier keine medizinischen Ratschläge geben. Wir ermutigen Sie\, alle Ideen mit Ärzten zu teilen. Bitte lesen Sie unsere Richtlinien zur virtuellen Teilnahme. URL:https://www.erdheim-chester.org/event/italienisch-community-chat-3/ CATEGORIES:Chats der italienischen Gemeinschaft ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Italian-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260414T110000 DTEND;TZID=America/Chicago:20260414T120000 DTSTAMP:20260201T213033Z CREATED:20260201T213033Z LAST-MODIFIED:20260201T213033Z UID:10001278-1776164400-1776168000@www.erdheim-chester.org SUMMARY:義大利社群聊天室 DESCRIPTION:立即註冊 \n在合理範圍內，聊天對任何討論主題都開放。經常討論的話題包括 ECD 診斷問題、治療、測試、知識淵博的醫生、癥狀、治療副作用，有時只是關於參與者生活中發生的愉快事情的友好討論。大多數參加會議的人都找到了聯繫，並在聊天會議之外繼續通信。這些會議還為那些有興趣盡可能多地瞭解 ECD 並相互支援的人提供了一個支持結構。 \n在加入ECD全球聯盟會議或網路研討會之前，請閱讀我們的虛擬參與政策。 \n注意： 在此處查看您的時區： 時區轉換器。 \n不會有醫療專業人員協助接聽這些電話。每個患者都是獨一無二的，這裡不能提供醫療建議;我們鼓勵與醫生分享所有想法。請閱讀我們的 虛擬參與政策。 URL:https://www.erdheim-chester.org/event/%e7%be%a9%e5%a4%a7%e5%88%a9%e7%a4%be%e7%be%a4%e8%81%8a%e5%a4%a9%e5%ae%a4-2/ CATEGORIES:義大利社區聊天 ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Italian-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260414T110000 DTEND;TZID=America/Chicago:20260414T120000 DTSTAMP:20260201T213033Z CREATED:20260201T213033Z LAST-MODIFIED:20260201T213033Z UID:10001271-1776164400-1776168000@www.erdheim-chester.org SUMMARY:Chat de la communauté italienne DESCRIPTION:Inscrivez-vous dès aujourd’hui \nLes chats sont ouverts à tous les sujets de discussion\, dans la limite du raisonnable. Les sujets souvent abordés sont les suivants : ECD\, les problèmes de diagnostic\, les traitements\, les tests\, les médecins compétents\, les symptômes\, les effets secondaires des traitements\, et parfois simplement des discussions amicales sur les choses agréables qui se passent dans la vie des participants. La plupart des participants aux sessions ont trouvé des liens et continuent à correspondre en dehors des sessions de chat. Les réunions constituent également une structure de soutien pour les personnes désireuses d’en apprendre le plus possible sur ECD et de se soutenir mutuellement. \nVeuillez lire notre politique de participation virtuelle avant de vous joindre à une réunion ou à un webinaire de l’Alliance mondiale ECD. \nNOTE : Vérifiez votre fuseau horaire ici : Convertisseur de fuseau horaire. \nAucun professionnel de la santé n’assistera à ces appels. Chaque patient est unique et il n’est pas possible de donner des conseils médicaux ici ; nous vous encourageons à partager vos idées avec des médecins. Veuillez lire notre politique de participation virtuelle. URL:https://www.erdheim-chester.org/event/chat-de-la-communaute-italienne-3/ CATEGORIES:Chats de la communauté italienne ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Italian-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260414T110000 DTEND;TZID=America/Chicago:20260414T120000 DTSTAMP:20260201T213033Z CREATED:20260201T213033Z LAST-MODIFIED:20260201T213033Z UID:10001256-1776164400-1776168000@www.erdheim-chester.org SUMMARY:Italian 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/italian-community-chat-3/ CATEGORIES:Italian Community Chats ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Italian-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260414T110000 DTEND;TZID=America/Chicago:20260414T120000 DTSTAMP:20260201T213033Z CREATED:20260201T213033Z LAST-MODIFIED:20260201T213033Z UID:10001272-1776164400-1776168000@www.erdheim-chester.org SUMMARY:Chat met de Italiaanse gemeenschap DESCRIPTION:Registreer vandaag \nChats staan open voor elk discussieonderwerp dat redelijk is. Vaak besproken onderwerpen zijn ECD diagnose kwesties\, behandelingen\, tests\, goed geïnformeerde artsen\, symptomen\, behandeling bijwerkingen\, en soms gewoon vriendelijke discussies over leuke dingen die gebeuren in het leven van de deelnemers. De meesten die de sessies bijwonen\, hebben connecties gevonden en blijven ook buiten de chatsessies corresponderen. De bijeenkomsten bieden ook een ondersteuningsstructuur voor degenen die zoveel mogelijk willen leren over ECD en elkaar willen steunen. \nLees ons beleid voor virtuele deelname voordat u deelneemt aan een bijeenkomst of webinar van ECD Global Alliance. \nOPMERKING: Controleer je tijdzone hier: Tijdzoneconverter. \nEr zal geen medische professional zijn die helpt bij deze gesprekken. Elke patiënt is uniek en medisch advies kan hier niet worden gegeven; we moedigen aan om alle ideeën met artsen te delen. Lees ons Beleid voor virtuele deelname. URL:https://www.erdheim-chester.org/event/chat-met-de-italiaanse-gemeenschap-3/ CATEGORIES:Italiaanse Gemeenschap Chats ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Italian-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260414T110000 DTEND;TZID=America/Chicago:20260414T120000 DTSTAMP:20260201T213033Z CREATED:20260201T213033Z LAST-MODIFIED:20260201T213033Z UID:10001273-1776164400-1776168000@www.erdheim-chester.org SUMMARY:Chat de la Comunidad Italiana DESCRIPTION:Regístrate hoy \nLos chats están abiertos a cualquier tema de debate dentro de lo razonable. Entre los temas que se debaten a menudo se incluyen: ECD cuestiones de diagnóstico\, tratamientos\, pruebas\, médicos expertos\, síntomas\, efectos secundarios de los tratamientos y\, a veces\, simplemente discusiones amistosas sobre cosas agradables que ocurren en la vida de los participantes. La mayoría de los que asisten a las sesiones han encontrado conexiones y siguen manteniendo correspondencia fuera de las sesiones de chat. Las reuniones también proporcionan una estructura de apoyo para quienes están interesados en aprender todo lo que puedan sobre ECD y proporcionarse apoyo mutuo. \nLee nuestra Política de participación virtual antes de unirte a una reunión o seminario web de la Alianza Global ECD. \nNOTA: Comprueba tu zona horaria aquí: Convertidor de husos horarios. \nNo habrá ningún profesional médico asistiendo a estas llamadas. Cada paciente es único y aquí no se pueden ofrecer consejos médicos; animamos a que todas las ideas se compartan con los médicos. Lee nuestra Política de participación virtual. URL:https://www.erdheim-chester.org/event/chat-de-la-comunidad-italiana-3/ CATEGORIES:Chats de la Comunidad Italiana ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Italian-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260414T110000 DTEND;TZID=America/Chicago:20260414T120000 DTSTAMP:20260201T213033Z CREATED:20260201T213033Z LAST-MODIFIED:20260201T213033Z UID:10001274-1776164400-1776168000@www.erdheim-chester.org SUMMARY:Bate-papo da comunidade italiana DESCRIPTION:Registre-se hoje \nOs bate-papos são abertos para qualquer tópico de discussão\, dentro do razoável. Os tópicos frequentemente discutidos incluem ECD questões de diagnóstico\, tratamentos\, testes\, médicos experientes\, sintomas\, efeitos colaterais do tratamento e\, às vezes\, apenas discussões amigáveis sobre coisas agradáveis que estão acontecendo na vida dos participantes. A maioria dos participantes das sessões encontrou conexões e continua a se corresponder fora das sessões de bate-papo. As reuniões também oferecem uma estrutura de apoio para aqueles que estão interessados em aprender o máximo possível sobre ECD e oferecer apoio mútuo. \nLeia nossa Política de Participação Virtual antes de participar de uma reunião ou webinar da ECD Global Alliance. \nOBSERVAÇÃO: Verifique seu fuso horário aqui: Conversor de fuso horário. \nNão haverá um profissional médico auxiliando nessas chamadas. Cada paciente é único e não é possível oferecer aconselhamento médico aqui; incentivamos que todas as ideias sejam compartilhadas com os médicos. Leia nossa Política de participação virtual. URL:https://www.erdheim-chester.org/event/bate-papo-da-comunidade-italiana-3/ CATEGORIES:Chats da comunidade italiana ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Italian-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260410T080000 DTEND;TZID=America/Chicago:20260410T090000 DTSTAMP:20260201T212911Z CREATED:20260201T212911Z LAST-MODIFIED:20260201T212911Z UID:10001259-1775808000-1775811600@www.erdheim-chester.org SUMMARY:Chat i det franske samfunnet DESCRIPTION:Registrer deg i dag \nChattene er åpne for alle diskusjonstemaer innenfor rimelighetens grenser. ECD Ofte diskuteres temaer som diagnoser\, behandlinger\, tester\, kunnskapsrike leger\, symptomer\, bivirkninger av behandlingen og noen ganger bare vennskapelige diskusjoner om hyggelige ting som skjer i deltakernes liv. De fleste som deltar på møtene\, har funnet nye kontakter og fortsetter å korrespondere utenom chatteøktene. Møtene gir også en støttestruktur for dem som er interessert i å lære så mye som mulig om ECD og gi hverandre gjensidig støtte. \nVennligst les våre retningslinjer for virtuell deltakelse før du deltar på et møte eller webinar på ECD Global Alliance. \nMERK: Sjekk tidssonen din her: Tidssoneomregner. \nDet vil ikke være noen medisinsk fagperson som bistår i disse samtalene. Hver pasient er unik\, og vi kan ikke gi medisinske råd her; vi oppfordrer til å dele alle ideer med leger. Vennligst les våre retningslinjer for virtuell deltakelse. URL:https://www.erdheim-chester.org/event/chat-i-det-franske-samfunnet-4/ CATEGORIES:Chatter i det franske samfunnet ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/French-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260410T080000 DTEND;TZID=America/Chicago:20260410T090000 DTSTAMP:20260201T212911Z CREATED:20260201T212911Z LAST-MODIFIED:20260201T212911Z UID:10001267-1775808000-1775811600@www.erdheim-chester.org SUMMARY:法語社區聊天 DESCRIPTION:立即註冊 \n在合理範圍內，聊天對任何討論主題都開放。經常討論的話題包括 ECD 診斷問題、治療、測試、知識淵博的醫生、癥狀、治療副作用，有時只是關於參與者生活中發生的愉快事情的友好討論。大多數參加會議的人都找到了聯繫，並在聊天會議之外繼續通信。這些會議還為那些有興趣盡可能多地瞭解 ECD 並相互支援的人提供了一個支持結構。 \n在加入ECD全球聯盟會議或網路研討會之前，請閱讀我們的虛擬參與政策。 \n注意： 在此處查看您的時區： 時區轉換器。 \n不會有醫療專業人員協助接聽這些電話。每個患者都是獨一無二的，這裡不能提供醫療建議;我們鼓勵與醫生分享所有想法。請閱讀我們的 虛擬參與政策。 URL:https://www.erdheim-chester.org/event/%e6%b3%95%e8%aa%9e%e7%a4%be%e5%8d%80%e8%81%8a%e5%a4%a9-4/ CATEGORIES:法語社區聊天 ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/French-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260410T080000 DTEND;TZID=America/Chicago:20260410T090000 DTSTAMP:20260406T180759Z CREATED:20260201T212911Z LAST-MODIFIED:20260406T180759Z UID:10001244-1775808000-1775811600@www.erdheim-chester.org SUMMARY:French 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/french-community-chat-4/ CATEGORIES:French Community Chats ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/French-Chat.jpg END:VEVENT END:VCALENDAR