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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
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20251024T180000
DTEND;TZID=America/Chicago:20251024T190000
DTSTAMP:20260604T161314
CREATED:20250927T155559Z
LAST-MODIFIED:20250927T155559Z
UID:10000919-1761328800-1761332400@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-5/
CATEGORIES:Australian and New Zealand Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/08/download-7.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20251021T140000
DTEND;TZID=America/Chicago:20251021T150000
DTSTAMP:20260604T161314
CREATED:20251003T132347Z
LAST-MODIFIED:20251009T130802Z
UID:10000931-1761055200-1761058800@www.erdheim-chester.org
SUMMARY:Topic: Exploring of alternating signaling and its impact on precision therapy in patients with Erdheim-Chester Disease
DESCRIPTION:Date: October 21\, 2025\nTime: 2:00 PM CT \nSpeaker: Samuel B. Reynolds\, M.D.\nMoffitt Cancer Center\nDr. Reynolds is originally from the Boston area and completed medical school at The University of South Florida Morsani College of Medicine. He would then complete an Internal Medicine residency and chief residency at The University of Louisville and a Hematology & Medical Oncology fellowship at The University of Michigan. He began to focus on histiocytic neoplasms in the later part of his training in Ann Arbor. Here\, he founded the Michigan Histiocytosis Working Group and has since joined the Histiocytosis Care Network as a researcher and physician. \nThroughout his career\, Dr. Reynolds has been passionate about the molecular characterization and translational care of hematologic disorders. Under his T32 at The University of Michigan\, he would publish several manuscripts pertaining to both outcomes with respect to targeted therapy and trends in peripheral blood monocytosis in histiocytic disorders. He currently serves as an Assistant Professor at the Moffitt Cancer Center and specializes in the research and care of myeloid and histiocytic neoplasms. \nThe webinar will explore the diversity of Erdheim-Chester Disease (ECD)\, both among patients and at the genetic level. Because ECD is a rare and complex hematologic cancer\, individualized treatment requires a collaborative approach. Understanding each patient’s unique molecular profile—the DNA changes that drive their disease—is key to guiding effective therapy. \n  \nRegister Here
URL:https://www.erdheim-chester.org/event/topic-exploring-of-alternating-signaling-and-its-impact-on-precision-therapy-in-patients-with-erdheim-chester-disease/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/10/Dr-Reynolds2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20251016T110000
DTEND;TZID=America/Chicago:20251016T120000
DTSTAMP:20260604T161314
CREATED:20250927T155424Z
LAST-MODIFIED:20250927T155424Z
UID:10000907-1760612400-1760616000@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-5/
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:20251014T190000
DTEND;TZID=America/Chicago:20251014T200000
DTSTAMP:20260604T161314
CREATED:20250927T155034Z
LAST-MODIFIED:20250927T155123Z
UID:10000883-1760468400-1760472000@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-5/
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:20251014T110000
DTEND;TZID=America/Chicago:20251014T120000
DTSTAMP:20260604T161314
CREATED:20250927T155257Z
LAST-MODIFIED:20250927T155257Z
UID:10000894-1760439600-1760443200@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-3/
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:20250930T130000
DTEND;TZID=America/Chicago:20250930T140000
DTSTAMP:20260604T161314
CREATED:20250828T230901Z
LAST-MODIFIED:20250902T161158Z
UID:10000835-1759237200-1759240800@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-3/
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:20250923T130000
DTEND;TZID=America/Chicago:20250923T140000
DTSTAMP:20260604T161314
CREATED:20250912T141227Z
LAST-MODIFIED:20251003T132823Z
UID:10000859-1758632400-1758636000@www.erdheim-chester.org
SUMMARY:Topic: Survivorship in Erdheim-Chester Disease: Incorporating the patient voice
DESCRIPTION:Date: September 23\, 2025\nTime: 1:00 PM CT \nSpeaker: Gaurav Goyal\, M.D.\nUniversity of Alabama at Birmingham\nDr. Goyal was born and raised in India and completed his Hematology-Oncology Fellowship at the Mayo Clinic in Rochester\, Minnesota. During his time at the Mayo Clinic\, he developed a specialized focus on histiocytic disorders\, including Erdheim-Chester Disease\, Langerhans cell histiocytosis\, and Rosai-Dorfman Disease. He conducted multiple studies on histiocytosis and played a key role in establishing the first multidisciplinary Histiocytosis Working Group\, aimed at improving care for individuals affected by these rare disorders. \nDr. Goyal subsequently joined the Hematology-Oncology Division at the University of Alabama at Birmingham (UAB)\, where he founded an Erdheim-Chester Disease care center. At UAB\, he also launched the Histiocytic Disorder Survivor Study in partnership with the Erdheim-Chester Disease Global Alliance (ECDGA)\, further advancing research and support for patients with histiocytic disorders. \n  \nRegister Here
URL:https://www.erdheim-chester.org/event/topic-survivorship-in-erdheim-chester-disease-incorporating-the-patient-voice/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/09/download-8.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250917T110000
DTEND;TZID=America/Chicago:20250917T120000
DTSTAMP:20260604T161314
CREATED:20250828T230341Z
LAST-MODIFIED:20250902T161602Z
UID:10000823-1758106800-1758110400@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-4/
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:20250912T190000
DTEND;TZID=America/Chicago:20250912T200000
DTSTAMP:20260604T161314
CREATED:20250828T224208Z
LAST-MODIFIED:20250902T161753Z
UID:10000799-1757703600-1757707200@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-4/
CATEGORIES:Australian and New Zealand Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/08/download-7.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250911T110000
DTEND;TZID=America/Chicago:20250911T120000
DTSTAMP:20260604T161314
CREATED:20250806T062911Z
LAST-MODIFIED:20250902T175938Z
UID:10000511-1757588400-1757592000@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-2/
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:20250909T190000
DTEND;TZID=America/Chicago:20250909T200000
DTSTAMP:20260604T161314
CREATED:20250828T225102Z
LAST-MODIFIED:20250902T161356Z
UID:10000811-1757444400-1757448000@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-4/
CATEGORIES:Caregiver Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Caregiver-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250907
DTEND;VALUE=DATE:20250914
DTSTAMP:20260604T161314
CREATED:20250805T142916Z
LAST-MODIFIED:20250805T144821Z
UID:10000463-1757286000-1757804399@www.erdheim-chester.org
SUMMARY:Looking Ahead: Erdheim-Chester Disease Awareness Week Is Coming Soon
DESCRIPTION:As we move into the final weeks of summer\, the Erdheim-Chester Disease Global Alliance (ECDGA) is preparing for one of the most impactful moments of the year—Erdheim-Chester Disease Awareness Week\, observed globally from September 8 through 13. \nThis dedicated week is an important opportunity to raise worldwide awareness of Erdheim-Chester Disease (ECD)—a rare\, life-altering blood cancer that affects individuals across continents\, cultures\, and communities. ECD can affect multiple organs\, including the bones\, brain\, heart\, lungs\, and kidneys. Because symptoms vary widely and the disease is so rare\, diagnosis is often delayed\, making awareness and education especially critical. \nAt ECDGA\, our mission is international in scope. Since our founding in 2008\, we’ve built a supportive\, collaborative community that now includes more than 1\,000 families in over 75 countries. We are committed to ensuring that no matter where someone lives\, they have access to information\, resources\, and a global network of support. \nErdheim-Chester Disease Awareness Week allows us to focus our efforts\, share accurate information\, and highlight the experiences of patients and caregivers around the world. Throughout August\, we will begin rolling out educational content\, awareness tools\, and personal stories from across the global ECD community. These materials will help prepare supporters\, families\, and healthcare professionals to take part in the weeklong campaign. \nThis is also a time for action. We invite everyone—patients\, advocates\, friends\, and medical professionals—to join the movement by following ECDGA on your preferred social media platform. Whether you use Facebook\, Instagram\, LinkedIn\, or X (formerly Twitter)\, your voice and your shares make a difference. Each post helps raise awareness in new regions\, among new audiences\, and with those who may still be searching for answers. \nErdheim-Chester Disease Awareness Week follows two of our most important annual events: the Patient and Family Gathering and the International Medical Symposium\, which were held earlier this year. These events brought together patients\, caregivers\, and leading researchers from around the world to share knowledge\, strengthen connections\, and highlight the latest scientific advancements in Erdheim-Chester Disease. Awareness Week builds on the momentum of those gatherings\, expanding the conversation beyond the conference setting and into the broader global community. \nWe hope you’ll join us throughout August and beyond. Mark your calendar\, follow along\, and help spread the word. Together\, as a global community\, we can continue to shine a light on Erdheim-Chester Disease. \nThe Erdheim-Chester Disease Global Alliance (ECDGA) does not provide medical advice\, diagnoses\, or treatments. All content is for informational purposes only. Please consult with a healthcare provider for medical concerns.
URL:https://www.erdheim-chester.org/event/looking-ahead-erdheim-chester-disease-awareness-week-is-coming-soon/
CATEGORIES:Featured
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/08/ribbon-awareness-month.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250830T090000
DTEND;TZID=America/Chicago:20250830T100000
DTSTAMP:20260604T161314
CREATED:20250818T153344Z
LAST-MODIFIED:20250818T153344Z
UID:10000523-1756544400-1756548000@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-2/
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:20250828T140000
DTEND;TZID=America/Chicago:20250828T170000
DTSTAMP:20260604T161314
CREATED:20250826T104649Z
LAST-MODIFIED:20251003T132913Z
UID:10000535-1756389600-1756400400@www.erdheim-chester.org
SUMMARY:Topic: Managing Diabetes Insipidus (DI)
DESCRIPTION:[Arginine VasoPressin Deficiency (AVP-D)]\nSpeaker: Pat Gildroy\, Ph.D\nPat Gildroy\, lead administrator of the Facebook Group\, “Got Arginine VasoPressin Deficiency?” about the resources\, symptoms\, tests\, and the patient experience for those living with Arginine Vasopressin Deficiency\, formerly known as Diabetes Insipidus. \nRegister Here
URL:https://www.erdheim-chester.org/event/topic-managing-diabetes-insipidus-di/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/08/download.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250827T100000
DTEND;TZID=America/Chicago:20250827T110000
DTSTAMP:20260604T161314
CREATED:20250806T062346Z
LAST-MODIFIED:20250806T062346Z
UID:10000498-1756288800-1756292400@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-3/
CATEGORIES:Canadian Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Canadian-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250826T130000
DTEND;TZID=America/Chicago:20250826T140000
DTSTAMP:20260604T161314
CREATED:20250806T062109Z
LAST-MODIFIED:20250806T062109Z
UID:10000487-1756213200-1756216800@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-2/
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:20250815T190000
DTEND;TZID=America/Chicago:20250815T200000
DTSTAMP:20260604T161314
CREATED:20250806T061526Z
LAST-MODIFIED:20250902T180949Z
UID:10000475-1755284400-1755288000@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-3/
CATEGORIES:Australian and New Zealand Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Australia-NZ-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250812T180000
DTEND;TZID=America/Chicago:20250812T190000
DTSTAMP:20260604T161314
CREATED:20250721T221547Z
LAST-MODIFIED:20250721T221612Z
UID:10000451-1755021600-1755025200@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-3/
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:20250806T120000
DTEND;TZID=America/Chicago:20250806T130000
DTSTAMP:20260604T161314
CREATED:20250826T105912Z
LAST-MODIFIED:20250910T140622Z
UID:10000547-1754481600-1754485200@www.erdheim-chester.org
SUMMARY:ECD\, A Global Vision
DESCRIPTION:Watch webinar on youtube \nXavier Solanich\, MD\, PhD is an internal medicine physician at Bellvitge University Hospital (BUH)\, where he specializes in the treatment of patients with immunological disorders and rare diseases\, including histiocytosis. In addition to his clinical work\, he serves as a professor at the University of Barcelona and as principal investigator at the Bellvitge Biomedical Research Institute (IDIBELL). Dr. Solanich has contributed to numerous national and international research projects focused on autoimmune diseases\, immunodeficiencies\, and other rare disorders. \nAs the lead physician at the ECD Care Center at BUH\, Dr. Solanich oversees the care of patients with ECD\, a condition historically viewed as a multisystem inflammatory disorder. Recent breakthroughs in the genetics and immunology of the disease have revolutionized its understanding and treatment\, prompting physicians to update and refine their protocols accordingly.
URL:https://www.erdheim-chester.org/event/ecd-a-global-vision/
CATEGORIES:Webinars
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250731T100000
DTEND;TZID=America/Chicago:20250731T110000
DTSTAMP:20260604T161314
CREATED:20250630T220212Z
LAST-MODIFIED:20250630T221243Z
UID:10000415-1753956000-1753959600@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-2/
CATEGORIES:Canadian Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Canadian-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250729T130000
DTEND;TZID=America/Chicago:20250729T140000
DTSTAMP:20260604T161314
CREATED:20250630T220702Z
LAST-MODIFIED:20250630T221251Z
UID:10000427-1753794000-1753797600@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/
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:20250719T190000
DTEND;TZID=America/Chicago:20250719T200000
DTSTAMP:20260604T161314
CREATED:20250620T202451Z
LAST-MODIFIED:20250623T223545Z
UID:10000391-1752951600-1752955200@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-2/
CATEGORIES:Australian and New Zealand Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Australia-NZ-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250711T070000
DTEND;TZID=America/Chicago:20250711T080000
DTSTAMP:20260604T161314
CREATED:20250618T062144Z
LAST-MODIFIED:20250618T062521Z
UID:10000379-1752217200-1752220800@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-2/
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:20250708T180000
DTEND;TZID=America/Chicago:20250708T190000
DTSTAMP:20260604T161314
CREATED:20250623T234720Z
LAST-MODIFIED:20250623T234720Z
UID:10000403-1751997600-1752001200@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-2/
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:20250628T090000
DTEND;TZID=America/Chicago:20250628T100000
DTSTAMP:20260604T161314
CREATED:20250519T065722Z
LAST-MODIFIED:20250614T010128Z
UID:10000047-1751101200-1751104800@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-june-2025/
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:20250625T100000
DTEND;TZID=America/Chicago:20250625T110000
DTSTAMP:20260604T161314
CREATED:20250519T065418Z
LAST-MODIFIED:20250614T010043Z
UID:10000046-1750845600-1750849200@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-june-2025/
CATEGORIES:Canadian Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Canadian-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250624T180000
DTEND;TZID=America/Chicago:20250624T190000
DTSTAMP:20260604T161314
CREATED:20250519T064843Z
LAST-MODIFIED:20250614T010031Z
UID:10000045-1750788000-1750791600@www.erdheim-chester.org
SUMMARY:Grief 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/grief-community-chat-june-2025/
CATEGORIES:Grief Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Grief-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250624T130000
DTEND;TZID=America/Chicago:20250624T140000
DTSTAMP:20260604T161314
CREATED:20250519T064509Z
LAST-MODIFIED:20250614T001505Z
UID:10000044-1750770000-1750773600@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-june-2025/
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;VALUE=DATE:20250618
DTEND;VALUE=DATE:20250620
DTSTAMP:20260604T161314
CREATED:20250519T064134Z
LAST-MODIFIED:20250614T005348Z
UID:10000043-1750287600-1750373999@www.erdheim-chester.org
SUMMARY:Australian/New Zealand Community Chat
DESCRIPTION:Register Today \n10:00 AM to 11:00 AM Sydney\, Brisbane & Melbourne\n8:00 AM to 9:00 AM Perth \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-june-2025/
CATEGORIES:Australian and New Zealand Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Australia-NZ-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250615
DTEND;VALUE=DATE:20250716
DTSTAMP:20260604T161314
CREATED:20250606T152433Z
LAST-MODIFIED:20250617T142602Z
UID:10000367-1750028400-1752620399@www.erdheim-chester.org
SUMMARY:Get Ready to Run\, Walk & Roll for Hope! The 2025 Fun Run is Here!
DESCRIPTION:The Erdheim-Chester Disease Global Alliance (ECDGA) is thrilled to announce the 2025 Global Steps Towards Awareness & Hope Virtual Fun Run\, Walk & Roll! From June 16 through July 15\, 2025\, we invite YOU—patients\, caregivers\, supporters\, and advocates around the world—to join our united movement of strength\, visibility\, and hope. \nThis fully virtual event is your opportunity to raise awareness of Erdheim-Chester Disease (ECD)\, an ultra-rare and often misunderstood blood cancer that affects just over a thousand families globally. Whether you lace up your sneakers\, roll through your neighborhood\, or walk a trail with your team\, every step you take helps amplify our mission: awareness\, support\, education\, and research for those impacted by ECD. \n  \nOrder Yours Today! \nKey Event Details: \n\nEvent Dates: June 16 – July 15\, 2025\nRegistration: Opens June 1\, 2025 — $20 per person\nWhere: Anywhere in the world — it’s fully virtual\nT-shirts are available for purchase. Order Today!\nForm a team\, represent your state or country\, and walk with purpose\n\n  \nAll funds raised support our global mission and bring us closer to better outcomes and ultimately\, a cure. Let’s keep moving forward—together. \nRegister Today \nQuestions? Reach out to Renita.Page@erdheim-chester.org \nLet’s step forward with strength. Let’s roll with resilience. Let’s run with hope. \n[usahtml5map id=”0″] \n[worldcountrieshtml5map id=”0″] \nApproved version
URL:https://www.erdheim-chester.org/event/get-ready-to-run-walk-roll-for-hope-the-2025-fun-run-is-here/
CATEGORIES:Annual Fun Run,Featured
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Approved-version-1.jpg
END:VEVENT
END:VCALENDAR