BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Erdheim-Chester Disease Global Alliance - ECPv6.16.3//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH 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 BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20280312T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20281105T070000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260331T130000 DTEND;TZID=America/Chicago:20260331T140000 DTSTAMP:20260604T051623 CREATED:20260303T205509Z LAST-MODIFIED:20260303T205509Z UID:10001341-1774962000-1774965600@www.erdheim-chester.org SUMMARY:Peer-to-Peer Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/peer-to-peer-community-chat-9/ CATEGORIES:Peer-to-Peer Community Chats ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Peer-to-Peer-Chat-1.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260331T130000 DTEND;TZID=America/Chicago:20260331T140000 DTSTAMP:20260604T051623 CREATED:20260303T205509Z LAST-MODIFIED:20260303T205509Z UID:10001346-1774962000-1774965600@www.erdheim-chester.org SUMMARY:Chat communautaire Peer-to-Peer 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-communautaire-peer-to-peer-9/ ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Peer-to-Peer-Chat-1.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260331T130000 DTEND;TZID=America/Chicago:20260331T140000 DTSTAMP:20260604T051623 CREATED:20260303T205509Z LAST-MODIFIED:20260303T205509Z UID:10001349-1774962000-1774965600@www.erdheim-chester.org SUMMARY:Κοινοτική συνομιλία μεταξύ ομοτίμων 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%ba%ce%bf%ce%b9%ce%bd%ce%bf%cf%84%ce%b9%ce%ba%ce%ae-%cf%83%cf%85%ce%bd%ce%bf%ce%bc%ce%b9%ce%bb%ce%af%ce%b1-%ce%bc%ce%b5%cf%84%ce%b1%ce%be%cf%8d-%ce%bf%ce%bc%ce%bf%cf%84%ce%af%ce%bc%cf%89%ce%bd-9/ ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Peer-to-Peer-Chat-1.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260331T130000 DTEND;TZID=America/Chicago:20260331T140000 DTSTAMP:20260604T051623 CREATED:20260303T205509Z LAST-MODIFIED:20260303T205509Z UID:10001352-1774962000-1774965600@www.erdheim-chester.org SUMMARY:צ'אט קהילתי עמית לעמית 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%a2%d7%9e%d7%99%d7%aa-%d7%9c%d7%a2%d7%9e%d7%99%d7%aa-9/ ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Peer-to-Peer-Chat-1.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260331T130000 DTEND;TZID=America/Chicago:20260331T140000 DTSTAMP:20260604T051623 CREATED:20260303T205509Z LAST-MODIFIED:20260303T205509Z UID:10001354-1774962000-1774965600@www.erdheim-chester.org SUMMARY:पीयर-टू-पीयर सामुदायिक 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%aa%e0%a5%80%e0%a4%af%e0%a4%b0-%e0%a4%9f%e0%a5%82-%e0%a4%aa%e0%a5%80%e0%a4%af%e0%a4%b0-%e0%a4%b8%e0%a4%be%e0%a4%ae%e0%a5%81%e0%a4%a6%e0%a4%be%e0%a4%af%e0%a4%bf%e0%a4%95-%e0%a4%9a%e0%a5%88-9/ ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Peer-to-Peer-Chat-1.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260407T130000 DTEND;TZID=America/Chicago:20260407T140000 DTSTAMP:20260604T051623 CREATED:20260325T031255Z LAST-MODIFIED:20260325T031255Z UID:10001369-1775566800-1775570400@www.erdheim-chester.org SUMMARY:Topic: Living with ECD and Pain: Communicating\, Coping\, and Finding Support DESCRIPTION:Speaker: Nicole Hemmenway\nChief Executive Officer\nU.S. Pain Foundation\nDate: April 7\, 2026\nTime: 1:00 PM CST \nNicole Hemmenway is the Chief Executive Officer of the U.S. Pain Foundation\, a patient-led nonprofit working to support the more than 60 million Americans living with chronic pain. A passionate advocate and nonprofit leader\, Nicole brings both professional expertise and lived experience to her work\, guiding the organization’s mission to educate\, empower\, connect\, and advocate for individuals living with pain\, as well as their care partners and providers. \nUnder her leadership\, the U.S. Pain Foundation has expanded access to peer support programs\, developed nationally recognized surveys that elevate the real experiences of people living with pain\, and amplified patient voices through initiatives like the INvisible Project. She is a frequent speaker at conferences\, medical schools\, and policy forums\, where she highlights the importance of compassionate care\, peer support\, equitable access to treatment\, and the integration of patient perspectives in research and decision-making. \nNicole’s work has been recognized nationally\, including being featured in a 2015 USA Today campaign and receiving the 2017 Unsung Hero Award. She is also the author of No\, It Is Not in My Head: The Journey of a Chronic Pain Survivor from Wheelchair to Marathon. She lives in the Nashville area with her husband and three sons. \nRegister Here URL:https://www.erdheim-chester.org/event/topic-living-with-ecd-and-pain-communicating-coping-and-finding-support/ CATEGORIES:Webinars ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2026/03/download45.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260410T080000 DTEND;TZID=America/Chicago:20260410T090000 DTSTAMP:20260604T051623 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 BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260414T110000 DTEND;TZID=America/Chicago:20260414T120000 DTSTAMP:20260604T051623 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:20260414T130000 DTEND;TZID=America/Chicago:20260414T140000 DTSTAMP:20260604T051623 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:20260416T110000 DTEND;TZID=America/Chicago:20260416T120000 DTSTAMP:20260604T051623 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:20260421T110000 DTEND;TZID=America/Chicago:20260421T120000 DTSTAMP:20260604T051623 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:20260422T220000 DTEND;TZID=America/Chicago:20260422T230000 DTSTAMP:20260604T051623 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;VALUE=DATE:20260429 DTEND;VALUE=DATE:20260501 DTSTAMP:20260604T051623 CREATED:20251030T142537Z LAST-MODIFIED:20260410T171905Z UID:10000955-1777420800-1777593599@www.erdheim-chester.org SUMMARY:11th Annual ECD Patient & Family Gathering - Birmingham 2026 DESCRIPTION:Erdheim-Chester Disease Global Alliance Announces 2026 Patient & Family Gathering. \nBirmingham\, AL — The Erdheim-Chester Disease Global Alliance (ECDGA) and UAB School of Medicine invites patients\, families\, healthcare professionals\, and researchers to save the date. \n\nPatient & Family Gathering (PFG): April 29–30\, 2026\n\nWednesday\, April 29\, 2026\nMeet and Greet: 3:00 pm-5:00 pm\nLocation: Hilton at UAB Downtown \nThursday\, April 30\, 2026\nPatient & Family Gathering: 8:00 am-4:30 pm\nLocation: Marnix E. Heersink Conference Center at the University of Alabama at Birmingham \nCelebration Dinner: 6:00 pm-8:00 pm\nLocation: Hilton at UAB Downtown \nThis event will bring together the global Erdheim-Chester disease community with leading medical experts to share the latest research\, clinical insights\, and community resources. Attendees can expect educational sessions\, opportunities to connect with peers\, and updates on emerging treatments and patient care. \nFurther details on the hotel and program highlights will be released in the coming months. \nAgenda\n\n\n\n\n TimeAllocated minutes (510 min total)Presentation Subject Possibilities (Actual Titles to be Provided by Presenters)PresenterSession Description\n\n\n\n\n 8:00 AM30Registration & Light Breakfast\n\n\n 8:30 AM15Welcome to Birmingham & PFG MeetingGaurav Goyal\, MDWelcome to the 11th Annual Erdheim-Chester Disease International Conference! Introductions to Birmingham\, UAB and the ECD Global Alliance.\n\n\n 8:45 AM15Manifestations of histiocytosis in adultsMatthew Collin\, MD\, PhDLearn about the difference types of adult histiocytic disorders. How are they different? How are they the same? What have we learned recently that makes us believe they are more alike than they once were.\n\n\n 9:00 AM15Histiocytosis at the Cellular LevelAstrid van Halteren\, PhDThis presentation will zoom into the different cell types which can be found in the bone marrow\, blood and tissues of patients diagnosed with histiocytosis\n\n\n 9:15 AM15ECD/Histio Treatment OptionsSam Reynolds\, MDECD/Histio Treatment Options (Current & on the horizon)\n\n\n 9:30 AM15Tagreted Therapy: The Good\, the Bad\, and the UnaffordableDaniel Sokolowski\, PharmDOverview of targeted treatments for histiocytosis and management of their adverse effects.\n\n\n 9:45 AM20BreakN/A\n\n\n 10:05 AM15Advancing treatment for histiocytic neurodegeneration through patient specific modelingNicole Coufal\, MD\, PhDThe importance of patient samples to the science\, and the importance of pilot funding and where we hope to take it in the future.\n\n\n 10:20 AM15What should I know about ECD Treatment and My Heart? Potential cardiac side effects of ECD treatment.Carrie Lenneman\, MD\, MSCIDiscuss common medication used in treatment of ECD . Review  potential cardiac side effects and management strategies of ECD treatment.\n\n\n 10:35 AM15ECD on the BrainEli Diamond\, MDDiscussion of ECD effects on the brain.\n\n\n 10:50 AM15Endocrine Manifestations of Erdheim-Chester DiseaseAlexandra Dodd\, MDUnderstand endocrine manifestations of ECD including effects on the pituitary gland. Understand the treatments for endocrine disorders related to ECD.\n\n\n 11:05 AM40Expert Q&AJulien Haroche\, MD\, PhD\nEli Diamond\, MD\nRonald Go\, MD\nGaurav Goyal\, MD (Moderator)Ask your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research.\n\n\n 11:45 AM15PicturesN/A\n\n\n 12:00 – 1:00pm60LunchN/A\n\n\n 1:00 PM20Research Opportunities (Panel Discussion - 5 min each)Eli Diamond\, MD (Registry)\nGaurav Goyal\, MD (Survivorship)\nJithma Abeykoon\, MD (CSF1R\, ERK)\nMatthew Collins\, MD\, PhDHear the answers from ECD Medical experts about the open research opportunities. Hear up-to-date answers from those who are doing ECD research.\n\n\n 1:20 PM20Expert Question & Answer PanelGaurav Goyal\, MD\nEli Diamond\, MD\nJithme Abeykoon\, MD\nMatthew Collins\, MD\, PhDAsk your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research. Don’t be shy\, ask your questions about ECD in general! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n 1:40 PM60Breakout SessionsKevin O'Brien\, RN\, MS-CRNP (patients) \n\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM (Caregivers)Breakout Session:\n\n- Patients: Personal Challenges in Living with Erdheim-Chester Disease\n\n- Cargivers & Family: Addressing YOUR Emotional Needs\n\n\n 2:40 PM20BreakN/A\n\n\n 3:00 PM15General medical management for ECDKevin O'Brien\, RN\, MS-CRNPHighlighting the importance of managing ongoing general medical problems. For example\, hypertension\, diabetes\, weight\, cholesterol levels\, etc. These uncontrolled medical problems can compound overall disease burden.\n\n\n 3:15 PM15Emotional and Cognitive Changes in ECDSylvia Huang\, PhD\, MA\, MEd\, FAAHPMLiving with Erdheim-Chester Disease can bring emotional\, cognitive\, and fatigue-related changes that are real and often invisible. This session offers understanding\, reassurance\, and practical guidance to help patients and families make sense of these experiences. Participants will learn about supportive strategies and resources that promote resilience\, wellbeing\, and hope.\n\n\n 3:30 PM15Fatigue and Pain in Erdheim-Chester Disease: Root Causes and Practical Strategies for Energy\, Relief\, and ResilienceRichard Taylor\, PhD\, DNP\, CRNP\, APN-BCThis session is designed to empower patients and caregivers by unpacking the root causes of fatigue and pain in Erdheim-Chester Disease (ECD).\n\nThe goal is to offer meaningful\, evidence-informed tools to reduce suffering\, build resilience\, and improve energy\, mobility\, and quality of life.\n\n\n 3:45 PM15Movement is MedicineElizabeth Bohorfoush\, DPTPatients and caregivers receive guidance through gentle\, low-level exercises to help reduce pain\, build strength\, improve posture\, and encourage activity.\n\n\n 4:00 PM20Expert Question & Answer PanelKevin O'Brien\, RN\, MS-CRNP\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM\nRichard Taylor\, PhD\, DNP\, CRNP\, APN-BC\nElizabeth Bohorfoush\, DPTAsk your questions and hear the answers from the experts. Don’t be shy\, ask your questions! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n 4:20 PM10ECDGA CloseJerome Henson\, ED (ECDGA)Learn more about the ECD Global Alliance. Hear why the organization was created and what has been accomplished as a result. Learn how the organization is able to do its work and how you can become more involved in improving the lives of all who have been impacted by Erdheim-Chester Disease.\n\n\n 510\n\n\n\n\nDownload Agenda \nRegister \nNOTE: Register before February 1st to take advantage of the early bird registration cost! Save $100 USD and register for only $100 USD! \nMark Heaney Awareness Award & Community Champion Award\nFebruary 1st\, 2026 – Last day to submit your nomination for the Mark Heaney Awareness Award & Community Champion Award. \n\nPlease submit your nominations here.\n\nMark Heaney Awareness Award.  Nominate a medical professional who is working to improve the lives of ECD patients by bringing awareness to the disease within the medical profession.\nCommunity Champion Award.  Nominate anyone (patient\, caregiver\, medical professional\, friend\, etc.) who has volunteered their time to help improve the lives of all of those impacted by ECD.\n\n\n\nContact:\nErdheim-Chester Disease Global Alliance\nEmail: support@erdheim-chester.org \nPatient Poster – Submissions\nFebruary 1\, 2026\, is the last day to complete a Patient Poster for display at the Patient & Family Gathering. Please submit your poster information here! \nTravel Scholarships\nTravel Assistance – The Glenn Padnick Memorial Travel Fund Now accepting applications for the 2026 ECDGA Conference. \nGlenn Padnick lived a full and impactful life while navigating Erdheim-Chester Disease (ECD) for decades. From 2011 to 2022\, he served with unwavering dedication on the ECD Global Alliance Board of Directors\, always ensuring that the voices and needs of patients remained central to every decision. \nIn honor of Glenn’s legacy of service and compassion\, his family generously established the Glenn Padnick Memorial Travel Fund. This fund provides financial assistance to help patients\, caregivers\, and medical professionals attend the annual ECD conference for those who may not otherwise be able to participate due to financial constraints. \nApplications are now open for travel assistance for the 2026 ECD Conference. Funding is limited\, and priority will be given to individuals who have never attended the event before. Our goal is to make this opportunity available to as many community members as possible with the resources available. \nApplication Deadline: February 1\, 2026 Award Notifications: No later than March 1\, 2026 \nApply Here: Glenn Padnick Memorial Travel Fund Request. \nConference Hotel & Travel Information\nConference Hotel\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nPhone: +1 (659) 251-1934 \nA block of rooms has been reserved at the Hilton Birmingham at UAB for conference attendees.\nRooms must be reserved by April 6\, 2026\, to receive the group rate. \nBook a Room \nIf you have any issues with booking your room\, please contact  Simon Hill at the Hilton Birmingham Downtown.  His number is 205-910-1970 and his email is simon.hill@hiltoncom. \nAirport Transportation\nBirmingham–Shuttlesworth International Airport (BHM)\nComplimentary shuttle service is available from the Birmingham airport to the hotel and is provided directly by the Hilton Downtown at UAB. \nTo use the shuttle:  \n\nCollect your luggage.\nCall the hotel at 205-933-9000 to request the shuttle.\nProceed to Door #4L and wait for the bus marked “Hilton.”\n\nTraveling via Atlanta\nHartsfield–Jackson Atlanta International Airport (ATL) is approximately 3 hours from Birmingham and offers direct international flights to most countries. Shuttle services are available between the Atlanta airport and Birmingham for travelers arriving through ATL. \nShuttle Service Link \nRegister \nOur Sponsors\nThis meeting is made possible by our sponsor\, Father Charles Balnaves of Melbourne\, Australia\, who supports this event in memory of his late wife\, Tanya. We are grateful for Father Charles’ continued\, generous sponsorship. We also appreciate the support of ARUP Laboratories.\n  URL:https://www.erdheim-chester.org/event/11th-annual-ecd-patient-family-gathering-birmingham-2026/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, AL\, 35205\, United States CATEGORIES:ECD Patient & Family Gathering,Featured ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Patient-Family-Gathering-hd-v2.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20260430 DTEND;VALUE=DATE:20260503 DTSTAMP:20260604T051623 CREATED:20250924T153146Z LAST-MODIFIED:20260410T171628Z UID:10000871-1777507200-1777766399@www.erdheim-chester.org SUMMARY:11th Annual ECD Medical Symposium - Birmingham 2026 DESCRIPTION:Erdheim-Chester Disease Global Alliance Announces 2026 Medical Symposium \nBirmingham\, AL — The Erdheim-Chester Disease Global Alliance (ECDGA) and UAB School of Medicine invites healthcare professionals and researchers. \n\nMedical Symposium: April 30–May 2\, 2026\n\nThursday\, April 30\, 2026\nPatient & Family Gathering: 8:00am-4:30pm\nLocation: Marnix E. Heersink Conference Center at University of Alabama at Birmingham\nCelebration Dinner: 6:00pm-8:00pm\nLocation: Hilton at UAB Downtown \nFriday\, May 1\, 2026\nMedical Symposium: 8:00am-5:00pm\nLocation: Marnix E. Heersink Conference Center at University of Alabama at Birmingham\nMedical Symposium Medical Reception: 6:00pm-8:00pm\nLocation: Marnix E. Heersink Conference Center at University of Alabama at Birmingham \nSaturday\, May 2\, 2026\nECD Care Center Meeting: 8:00am-11:00am\nLocation: UAB Cancer Center \nThis event will bring together the global Erdheim-Chester disease community with leading medical experts to share the latest research\, clinical insights\, and community resources. Attendees can expect educational sessions\, opportunities to connect with peers\, and updates on emerging treatments and patient care. \nFurther details on the hotel and program highlights will be released in the coming months. \nAgenda\n\n\n\n\n TimeSubjectPresenter\n\n\n\n\n 8:00 amRegistration & light breakfast\n\n\n 8:30 amWelcome to Birmingham and the 11th Annual Erdheim-Chester Disease International ConferenceGaurav Goyal\nUniversity of Alabama at Birmingham\, Birmingham\, AL USA\n\n\n Keynote Address\n\n\n 8:45 am Diversity and Degeneration in\nNeurohistiocytic DiseaseNicole Coufal\nUniversity of California\, San Diego\nUSA\n\n\n 9:25 amBreak\n\n\n Morning Abstract Presentations Session 1: Cells\, Clones & Circuits: Where Histiocytosis Begins (and Persists)\n\n\n 9:35 amARAF Mutations Drive Histiocytic Neoplasms\nIn Vivo and Provide Insights into Cellular\nOriginBenjamin Durham\nRutgers Cancer Institute\, Robert\nWood Johnson School of Medicine\,\nBrunswick\, NJ\n\n\n 9:50 amTracking BRAF V600E Persistence under MEK\nInhibition in Histiocytoses: a B-cell–enriched\nsignalJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 10:05 amDistribution of MAP2K1 Variants Across\nPeripheral Blood Cells in Erdheim-Chester\nDisease and Other HistiocytosesIrena Ungureanu\nAmbroise-Paré Hospital\, Pathology\nDepartment\, Boulogne-Billancourt\,\nFrance\n\n\n 10:20 amThe Clonal Origin and Evolution of High-Risk\nMultisystem Histiocytosis in AdultsMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n 10:35 amNetworking Break\n\n\n Morning Abstract Presentations Session 2: Genotype → Therapy: Biomarkers\, Responses\, and New Vulnerabilities\n\n\n 10:50 amKRAS Mutations in Histiocytic Neoplasms:\nMutation Spectrum and Response to MEK\nInhibitionDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:05 amCyclin D1 Overexpression Drives Replication\nStress and Creates Therapeutic\nVulnerabilities in Histiocytic NeoplasmsDongni Yi\nMayo Clinic\, Rochester\, MN USA\n\n\n 11:20 amClonal Hematopoiesis Predicts Response to\nInterferon-α in Erdheim-Chester Disease and\nMyeloproliferative NeoplasmsJérôme Razanamahery\nDijon University Hospital\, France\n\n\n 11:35 amImpact of Additional Genetic Variants in the\nCourse of Erdheim-Chester Disease… a\nMulticentric Longitudinal Study of 445 French\nPatientsFélicien Triboulet\nPitié-Salpêtrière hospital\, Sorbonne\nUniversity\, Paris\, France\n\n\n 11:50 amGroup Photo\n\n\n 12:00 pmLunch\n\n\n Afternoon Abstract Presentations Session 3: Pixels to Patterns: ECD and Xanthogranuloma\n\n\n 1:00 pmCentral Nervous System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:15 pmMusculoskeletal System Imaging\nAbnormalities in Erdheim–Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n 1:30 pmPatterns of Presentation and Outcomes in\nAdult XanthogranulomaGuneet Janda\nMayo Clinic\, Rochester\, MN USA\n\n\n 1:45 pmNetworking Break\n\n\n Afternoon Abstract Presentations Session 4: Care in the Real World: Treatment Patterns and Survivorship\n\n\n 2:00 pmReal World Frontline Systemic Anti-Cancer\nTreatment Patterns and Outcomes in\nErdheim–Chester DiseaseCarla Isabel Borre\nMayo Clinic\, Rochester\, MN USA\n\n\n 2:15 pmBurden of Chronic Health Conditions After\nDiagnosis of Erdheim–Chester Disease\n(ECD): Early Results from the Histiocytic\nDisorder Survivor StudyGaurav Goyal\nUniversity of Alabama at\nBirmingham\, Birmingham\, AL USA\n\n\n 2:30 pmDestombes-Rosai-Dorfman Disease:\nClinical\, Molecular Characteristics and\nTreatment Response: data from a\nretrospective cohort of 107 patientsJulien Haroche\nDepartment of Internal Medicine &\nE3M Institute\, Pitié-Salpêtrière\nHospital\, AP-HP – Sorbonne\nUniversity\, Paris\, France\n\n\n 2:45 pmConsiderations for Assessment and\nTreatment of Neuropsychiatric Symptoms in\nECDAnneka Johnston\nRush University Medical Center\,\nChicago IL\n\n\n Poster Presentations and Networking\n\n\n 3:00 pmErdheim-Chester Disease (ECD) is a Rare\nHistiocytic Neoplasm of Non-Langerhans\nCell HistiocytosisAbdalla Bowirrat\nAriel University\, Israel\n\n\n Diagnostic challenges in mixed ErdheimChester Disease and Langerhans Cell\nHistiocytosis in a 54-year-old maleSameer Andani\nMofitt Cancer Center & University\nof South Florida\n\n\n A Mycosis Fungoides-like Drug Reaction\nRapidly Resolving Following Switch from\nBRAF Inhibitor to MEK Inhibitor Monotherapy\nin Erdheim-Chester DiseaseSaipriya Ayyar\nUniversity of Cincinnati/UC Health\,\nCincinnati OH\n\n\n Multimodality Imaging in Erdheim–Chester\nDisease: Radiologic Insights from Pediatric\nand Adult CasesPriyanka Naranje\nAll India Institute of Medical\nSciences\, New Delhi\, India\n\n\n Cardiovascular System Imaging\nAbnormalities in Erdheim-Chester Disease: A\nSystematic ReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n BRAF-Positive Erdheim–Chester Disease with\nProgressive Pulmonary and Vascular\nInvolvement Successfully Treated with\nVemurafenib: A Case ReportHulya Yilmaz Tekinhatun\nDiyarbakir Gazi Yasargil Training and\nResearch Hospital\, Turkey\n\n\n Concurrent Erdheim-Chester Disease and\nClassical Hodgkin Lymphoma with\nunexpected response to lymphoma-directed\ntherapyRebecca Denson\nNew York Presbyterian-Weill Cornell\nMedicine\, New York\, NY\n\n\n Abdominal Imaging Abnormalities in\nErdheim-Chester Disease: A Systematic\nReviewMustafa Abomohsen\nBrookdale University Hospital and\nMedical Center\, Brooklyn\, NY USA\n\n\n Prevalence and distribution of ErdheimChester Disease in the UK estimated from\nreferral to a National Advisory PanelMatthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 3:45 pmAll that glitters: retro-orbital\nxanthogranuloma or ECD?Matthew Collin\nNewcastle University\, United\nKingdom\n\n\n Challenging Case Study\n\n\n 4:15 pmThe Clue Was the Blood Pressure: Atypical\nErdheim–Chester DiseaseJithma Abeykoon\nMayo Clinic\, Rochester\, MN USA\n\n\n Closing Remarks & Student Abstract Award\n\n\n 4:45 pmECD Global Alliance into the FutureJerome Henson\nExecutive Director\, ECD Global\nAlliance\, DeRidder\, LA USA\n\n\n 4:55 pmJunior Investigator – Best Student\nPresentation AwardOshrat Hershkovitz-Rokah\nAriel University & Assut\n\n\n\n\nDownload Agenda \nRegister \nNOTE: Register before February 1st to take advantage of the early bird registration cost! Save $200 USD and register for only $300 USD! \nMark Heaney Awareness Award & Community Champion Award\nFebruary 1st\, 2026 – Last day to submit your nomination for the Mark Heaney Awareness Award & Community Champion Award . \n\nPlease submit your nominations here.\n\nMark Heaney Awareness Award.  Nominate a medical professional who is working to improve the lives of ECD patients by bringing awareness to the disease within the medical profession.\nCommunity Champion Award.  Nominate anyone (patient\, caregiver\, medical professional\, friend\, etc.) who has volunteered their time to help improve the lives of all of those impacted by ECD.\n\n\n\nOral / Poster Presentation Abstracts\nFebruary 1\, 2026- Abstracts Due. \n\nAbstract submissions for the Medical Symposium on 1 May\, are accepted here  Please submit abstracts for oral and/or poster presentation.  This is a great opportunity to share your work and the work of your colleagues.  Please let them know of the opportunity.\n\nTravel Scholarships\nTravel Assistance – The Glenn Padnick Memorial Travel Fund Now accepting applications for the 2026 ECDGA Conference. \nGlenn Padnick lived a full and impactful life while navigating Erdheim-Chester Disease (ECD) for decades. From 2011 to 2022\, he served with unwavering dedication on the ECD Global Alliance Board of Directors\, always ensuring that the voices and needs of patients remained central to every decision. \nIn honor of Glenn’s legacy of service and compassion\, his family generously established the Glenn Padnick Memorial Travel Fund. This fund provides financial assistance to help patients\, caregivers\, and medical professionals attend the annual ECD conference for those who may not otherwise be able to participate due to financial constraints. \nApplications are now open for travel assistance for the 2026 ECD Conference. Funding is limited\, and priority will be given to individuals who have never attended the event before. Our goal is to make this opportunity available to as many community members as possible with the resources available. \nApplication Deadline: February 1\, 2026 Award Notifications: No later than March 1\, 2026 \nApply Here: Glenn Padnick Memorial Travel Fund Request. \nConference Hotel & Travel Information\nConference Hotel\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nPhone: +1 (659) 251-1934 \nA block of rooms has been reserved at the Hilton Birmingham at UAB for conference attendees.\nRooms must be reserved by April 6\, 2026\, to receive the group rate. \nBook a Room \nIf you have any issues with booking your room\, please contact  Simon Hill at the Hilton Birmingham Downtown.  His number is 205-910-1970 and his email is simon.hill@hiltoncom. \nAirport Transportation\nBirmingham–Shuttlesworth International Airport (BHM)\nComplimentary shuttle service is available from the Birmingham airport to the hotel and is provided directly by the Hilton Downtown at UAB. \nTo use the shuttle:  \n\nCollect your luggage.\nCall the hotel at 205-933-9000 to request the shuttle.\nProceed to Door #4L and wait for the bus marked “Hilton.”\n\nTraveling via Atlanta\nHartsfield–Jackson Atlanta International Airport (ATL) is approximately 3 hours from Birmingham and offers direct international flights to most countries. Shuttle services are available between the Atlanta airport and Birmingham for travelers arriving through ATL. \nShuttle Service Link \nContact:\nErdheim-Chester Disease Global Alliance\nEmail: support@erdheim-chester.org \nRegister \nOur Sponsors\n  URL:https://www.erdheim-chester.org/event/11th-annual-ecd-medical-symposium-birmingham-2026/ LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, 35205\, United States CATEGORIES:ECD Medical Symposium,Featured ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/09/Medical-Symposium-hd-v2.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260512T130000 DTEND;TZID=America/Chicago:20260512T140000 DTSTAMP:20260604T051623 CREATED:20260506T123856Z LAST-MODIFIED:20260506T123856Z UID:10001430-1778590800-1778594400@www.erdheim-chester.org SUMMARY:Caregiver Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/caregiver-community-chat-12/ CATEGORIES:Caregiver Community Chats ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Caregiver-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260519T110000 DTEND;TZID=America/Chicago:20260519T120000 DTSTAMP:20260604T051623 CREATED:20260506T123951Z LAST-MODIFIED:20260506T123951Z UID:10001431-1779188400-1779192000@www.erdheim-chester.org SUMMARY:Spanish Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/spanish-community-chat-9/ CATEGORIES:Spanish Community Chats ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Spanish-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260521T110000 DTEND;TZID=America/Chicago:20260521T120000 DTSTAMP:20260604T051623 CREATED:20260506T124103Z LAST-MODIFIED:20260506T124103Z UID:10001443-1779361200-1779364800@www.erdheim-chester.org SUMMARY:Canadian Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/canadian-community-chat-11/ CATEGORIES:Canadian Community Chats ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/download-5.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260522T043000 DTEND;TZID=America/Chicago:20260522T053000 DTSTAMP:20260604T051623 CREATED:20260506T124230Z LAST-MODIFIED:20260506T124230Z UID:10001449-1779424200-1779427800@www.erdheim-chester.org SUMMARY:Australian/New Zealand Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/australian-new-zealand-community-chat-12/ CATEGORIES:Australian and New Zealand Community Chats ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/12/A-N.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260526T130000 DTEND;TZID=America/Chicago:20260526T140000 DTSTAMP:20260604T051623 CREATED:20260506T124359Z LAST-MODIFIED:20260506T124359Z UID:10001467-1779800400-1779804000@www.erdheim-chester.org SUMMARY:Peer-to-Peer Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/peer-to-peer-community-chat-10/ CATEGORIES:Peer-to-Peer Community Chats ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Peer-to-Peer-Chat-1.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260609T130000 DTEND;TZID=America/Chicago:20260609T140000 DTSTAMP:20260604T051623 CREATED:20260526T030702Z LAST-MODIFIED:20260526T030702Z UID:10001514-1781010000-1781013600@www.erdheim-chester.org SUMMARY:Caregiver Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/caregiver-community-chat-13/ CATEGORIES:Caregiver Community Chats ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Caregiver-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260616T110000 DTEND;TZID=America/Chicago:20260616T120000 DTSTAMP:20260604T051623 CREATED:20260526T030752Z LAST-MODIFIED:20260526T030752Z UID:10001515-1781607600-1781611200@www.erdheim-chester.org SUMMARY:Spanish Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/spanish-community-chat-10/ CATEGORIES:Spanish Community Chats ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Spanish-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260618T040000 DTEND;TZID=America/Chicago:20260618T050000 DTSTAMP:20260604T051623 CREATED:20260526T031107Z LAST-MODIFIED:20260526T031107Z UID:10001539-1781755200-1781758800@www.erdheim-chester.org SUMMARY:Australian/New Zealand Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/australian-new-zealand-community-chat-13/ CATEGORIES:Australian and New Zealand Community Chats ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2026/05/australia-june.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260618T130000 DTEND;TZID=America/Chicago:20260618T140000 DTSTAMP:20260604T051623 CREATED:20260526T030939Z LAST-MODIFIED:20260526T030939Z UID:10001521-1781787600-1781791200@www.erdheim-chester.org SUMMARY:Canadian Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/canadian-community-chat-12/ CATEGORIES:Canadian Community Chats ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/download-5.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260630T130000 DTEND;TZID=America/Chicago:20260630T140000 DTSTAMP:20260604T051623 CREATED:20260526T031154Z LAST-MODIFIED:20260526T031154Z UID:10001551-1782824400-1782828000@www.erdheim-chester.org SUMMARY:Peer-to-Peer Community Chat DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy. URL:https://www.erdheim-chester.org/event/peer-to-peer-community-chat-11/ CATEGORIES:Peer-to-Peer Community Chats ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Peer-to-Peer-Chat-1.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260709T080000 DTEND;TZID=America/Chicago:20260709T090000 DTSTAMP:20260604T051623 CREATED:20260528T141730Z LAST-MODIFIED:20260528T141730Z UID:10001598-1783584000-1783587600@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-5/ CATEGORIES:French Community Chats 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:20260713T110000 DTEND;TZID=America/Chicago:20260713T120000 DTSTAMP:20260604T051623 CREATED:20260526T031328Z LAST-MODIFIED:20260526T031328Z UID:10001563-1783940400-1783944000@www.erdheim-chester.org SUMMARY:German Community Chat DESCRIPTION:Chats 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. \nRegister Today \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/german-community-chat-4/ CATEGORIES:German Community Chats ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/German-Chat.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260714T110000 DTEND;TZID=America/Chicago:20260714T120000 DTSTAMP:20260604T051623 CREATED:20260526T031418Z LAST-MODIFIED:20260526T031418Z UID:10001575-1784026800-1784030400@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-4/ 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;VALUE=DATE:20270801 DTEND;VALUE=DATE:20270901 DTSTAMP:20260604T051623 CREATED:20260519T170441Z LAST-MODIFIED:20260531T142109Z UID:10001490-1817078400-1819756799@www.erdheim-chester.org SUMMARY:12th Annual ECD Patient & Family Gathering – Glasgow\, Scotland 2027 DESCRIPTION:We are excited to announce that the 12th Annual ECDGA Patient and Family Gathering will be held in Glasgow\, Scotland in August 2027. This special event will bring together patients\, families\, researchers\, clinicians\, and advocates from around the world to connect\, learn\, and support one another. The gathering will be held in conjunction with the Histiocyte Society meeting. Additional details\, including exact dates\, venue information\, and registration details\, will be announced soon. URL:https://www.erdheim-chester.org/event/12th-annual-ecd-patient-family-gathering-glasgow-scotland-2027/ CATEGORIES:ECD Patient & Family Gathering,Featured ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2026/05/patients-and-families-1800-1200.jpg END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20270801 DTEND;VALUE=DATE:20270901 DTSTAMP:20260604T051623 CREATED:20260519T170446Z LAST-MODIFIED:20260531T142121Z UID:10001491-1817078400-1819756799@www.erdheim-chester.org SUMMARY:12th Annual ECD Medical Symposium – Glasgow\, Scotland 2027 DESCRIPTION:We are excited to announce that the 12th Annual ECDGA Medical Symposium will be held in Glasgow\, Scotland in August 2027. This special event will bring together researchers and clinicians from around the world to connect\, learn\, and support one another. The gathering will be held in conjunction with the Histiocyte Society meeting. Additional details\, including exact dates\, venue information\, and registration details\, will be announced soon. URL:https://www.erdheim-chester.org/event/12th-annual-ecd-medical-symposium-glasgow-scotland-2027/ CATEGORIES:ECD Medical Symposium,Featured ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2026/05/medical-professionals-1800-1200.jpg END:VEVENT END:VCALENDAR