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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:20250828T140000
DTEND;TZID=America/Chicago:20250828T170000
DTSTAMP:20260604T150151
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:20260604T150151
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:20260604T150151
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:20260604T150151
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:20260604T150151
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:20260604T150151
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
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/ECD-Global-Vision.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250731T100000
DTEND;TZID=America/Chicago:20250731T110000
DTSTAMP:20260604T150151
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:20260604T150151
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:20260604T150151
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:20260604T150151
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:20260604T150151
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:20260604T150151
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:20260604T150151
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:20260604T150151
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:20260604T150151
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:20260604T150151
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:20260604T150151
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
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250610T180000
DTEND;TZID=America/Chicago:20250610T190000
DTSTAMP:20260604T150151
CREATED:20250519T063818Z
LAST-MODIFIED:20250614T002044Z
UID:10000042-1749578400-1749582000@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-june-2025/
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:20250526T070000
DTEND;TZID=America/Chicago:20250528T100000
DTSTAMP:20260604T150151
CREATED:20250115T231711Z
LAST-MODIFIED:20251119T043711Z
UID:10000014-1748242800-1748426400@www.erdheim-chester.org
SUMMARY:10th Annual ECD Medical Symposium
DESCRIPTION:Register Here \nMedical professionals from around the world will gather in Barcelona May 26-28 to share scientific findings\, patient outcomes\, and case studies related to Erdheim-Chester Disease. We welcome you to join your professional colleagues to share and learn about new findings related to the science of ECD\, the diagnostic details\, and the care of those living with ECD. This is the only meeting where medical specialists from different fields join together to discuss ECD. We look forward to you joining in the discussions and hope you might find opportunities for collaboration. \n \nAbstract Submissions Abstracts related to ECD and/or adult histiocytosis are being solicited for presentation at the Medical Symposium.  Abstracts are being accepted 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.  Abstracts must be submitted no later than February 24\, 2025. \nSubmit Abstract \nSchedule of Events Sunday\, May 25\, 2025 – Pre-Meeting Activity \n5 – 6 pm Catholic Mass Anyone interested is invited to a Catholic Mass before the beginning of the conference. Father Charles Balnaves\, the sponsor of the Patient & Family Gathering\, will celebrate the Mass. \nMonday\, May 26\, 2025 – Patient & Family Gathering. \n8 – 8:30 am Registration & Continental Breakfast Enjoy a light breakfast with others and prepare for an informational day full of hope. \n8:30 am – 4:30 pm Patient & Family Gathering Spend the day learning more about ECD from medical professionals\, patients\, and others. \n6 – 8 pm Celebration Evening Spend time with patients\, family members\, friends\, and medical professionals for an evening of hope and celebration. \nTuesday\, May 27\, 2025 – Medical Symposium. \n8 – 8:30 am Registration & Continental Breakfast Enjoy a light breakfast with others and prepare for an informational day full of hope. \n8:30 am – 4:30 pm Medical Symposium Spend the day learning more about ECD from other investigators and clinicians. Discover possible future collaboration opportunities. \n6:30 – 8:30 pm Medical Reception Spend time relaxing and meeting with friends. \nWednesday\, May 28\, 2025 – Care Center Meeting. 8 – 11 am Care Center Meeting Discuss patient care and opportunities to work together to improve patient outcomes. Who attends? The event is open to the entire ECD community of medical professionals. Please feel free to invite your colleagues. \nRegister Here \nHost Xavier Solanich\, MD\, PhD is this year’s host of the ECD Meeting. Dr. Solanich is a medical specialist in internal medicine at the University Hospital of Bellvitge where he has practiced since August 2010. He leads the ECD Referral Care Center at Bellvitge and in addition to ECD patients\, he attends to patients with other rare diseases such as Rosai-Dorfman\, primary immunodeficiencies\, and some hereditary metabolic diseases (especially Gaucher). He sees patients with systemic autoimmune diseases\, mainly systemic vasculitis\, periaortitis / retroperitoneal fibrosis\, and IgG4-related diseases. He is also a consultant to the ophthalmology service for diagnosis and management of patients with uveitis\, immune / ischemic optic neuritis\, and orbital pseudotumor. Dr. Solanich also works in the Systemic Diseases and Aging group at the Bellvitge Biomedical Research Institute (IDIBELL). He has participated in multiple national and international research projects to study systemic autoimmune diseases\, immunodeficiencies\, and other rare diseases. He has also participated in several clinical trials as principal investigator or collaborator\, obtaining competitive public funding. As a result of his research\, he is the author of several articles published in indexed scientific journals. \nAgenda \nA detailed agenda will be available before the conference. Hotel A room block has been set up for the Patient & Family Gathering at – The Renaissance Barcelona Fira Hotel Plaza Europa\, 50-52\, L’Hospitalet de Llobregat\, Barcelona\, Spain\, 08902 Please make your reservations using the link below before the hotel deadline. Book your group rate for the ECD Global Alliance Conference Group Room Rate: Single: 240 Euro/night; Double: 260 Euro/night Hotel reservation deadline: April 21\, 2025 \nTravel Barcelona is served by the Josep Tarradellas Barcelona-El Prat Airport. Transportation options between the airport and the hotel include: \n\nSubway. Metro line L9 Sud connects the airport terminals T1 and T2 with the Renaissance Barcelona Fira Hotel. The hotel metro station is Europa Fira. The metro operates daily between 5 am and midnight.\nPrivate Transfer. The hotel website states that private transfer is available for 101 Eur (one way) on request.\n\nScholarship Help \nWe have a limited number of scholarships available if a member of the ECD medical professional community would be unable to attend due to financial reasons. If a scholarship is needed\, please contact the ECDGA at support@Erdheim-Chester.org as early as possible. You will need to include your name\, email address\, position in the community (clinician\, specialist\, scientist\, student\, etc.)\, and a statement of your need. We will let everyone know what help we can provide by the end of February. \nAwareness Nomination Opportunity \nYou are encouraged to nominate leaders in the ECD community – https://ecdga.questionpro.com/2025-ECDGA-Award-Nomination. Submit a Mark Heaney Award nomination to honor the medical professional you believe has improved the lives of ECD patients by bringing awareness to ECD within the medical profession. 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. The award recipient will be announced at the ECD Celebration Evening on May 26. \nAttendee Experiences \n“ECDGA is doing a phenomenal job. Thank you team ECDGA for all that you do to improve patient care.” \n– Radiologist \n“It is my first ECDGA meeting and I really enjoyed it.” \n– Basic Scientist \n“This is the first time to attend an ECD meeting. This is a very amazing event which will definitely change my practice and attitude.” \n– Hematologist
URL:https://www.erdheim-chester.org/event/10th-annual-ecd-medical-symposium/
LOCATION:The Renaissance Barcelona Fira Hotel\, Plaza Europa\, 50-52\, L'Hospitalet de Llobregat\, Barcelona\, 08902\, Spain
CATEGORIES:ECD Medical Symposium
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/01/skyline-barcelona-ms.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250526T070000
DTEND;TZID=America/Chicago:20250526T190000
DTSTAMP:20260604T150151
CREATED:20250526T221649Z
LAST-MODIFIED:20251119T044028Z
UID:10000013-1748242800-1748286000@www.erdheim-chester.org
SUMMARY:10th Annual ECD Patient & Family Gathering
DESCRIPTION:Register Here \nPart of the ECD Global Alliance’s mission is to educate and support patients with the information they need to advocate for their health and quality of life. The purpose of a Patient and Family Gathering (PFG) is to unite patients and family members\, as well as increase their knowledge and understanding of Erdheim-Chester disease. \n \nThe PFG provides attendees with a place to meet and an opportunity to direct questions and concerns to an international group of medical professionals who have experience in caring for ECD patients and who are doing research in the field. The information that is shared can help lead a patient to quickly learn more about ECD and possible treatment options\, as well as hear about the latest research findings. \nRegister Here \nOverview\nThe ECD Global Alliance 2025 Patient & Family Gathering will take place at the Renaissance Barcelona Fira Hotel on May 26. This meeting will bring together patients\, family members\, carers\, clinicians\, researchers\, and members of support organizations to share knowledge and experiences related to ECD diagnosis\, treatment\, daily living. There will be time for learning\, time for sharing\, and time for connecting with others who have been affected by ECD. We hope it will be a time for all to become better informed and find increased hope for the future. \nOn-site simultaneous interpreters will enable participation for English\, French\, German\, Italian\, and Spanish speakers. \nSchedule of Events\nSunday\, May 25\, 2025 – Pre-Meeting Activity \n5 – 6 pm Catholic Mass\nAnyone interested is invited to a Catholic Mass before the beginning of the conference. Father Charles Balnaves\, the sponsor of the Patient & Family Gathering\, will celebrate the Mass. \nMonday\, May 26\, 2025 \n8:00 am-8:30 am Registration & Continental Breakfast\nEnjoy a light breakfast with others and prepare for an informational day full of hope. \n8:30 am-4:40 pm Patient & Family Gathering\nSpend the day learning more about ECD from medical professionals\, patients\, and others. \n6:00 pm-8:00 pm Celebration Evening\nSpend time with patients\, family members\, friends\, and medical professionals for an evening of hope and celebration. \nWho attends?\nThe event is open to the entire ECD community of patients\, carers\, family members\, and ECD medical professionals. Please feel free to invite your family\, friends\, and members of your medical team. \nRegister Here \nHost\nXavier Solanich\, MD\, PhD is this year’s host of the ECD Meeting. Dr. Solanich is a medical specialist in internal medicine at the University Hospital of Bellvitge where he has practiced since August 2010. He leads the ECD Referral Care Center at Bellvitge and in addition to ECD patients\, he attends to patients with other rare diseases such as Rosai-Dorfman\, primary immunodeficiencies\, and some hereditary metabolic diseases (especially Gaucher). He sees patients with systemic autoimmune diseases\, mainly systemic vasculitis\, periaortitis / retroperitoneal fibrosis\, and IgG4-related diseases. He is also a consultant to the ophthalmology service for diagnosis and management of patients with uveitis\, immune / ischemic optic neuritis\, and orbital pseudotumor… \nDr. Solanich also works in the Systemic Diseases and Aging group at the Bellvitge Biomedical Research Institute (IDIBELL). He has participated in multiple national and international research projects to study systemic autoimmune diseases\, immunodeficiencies\, and other rare diseases. He has also participated in several clinical trials as principal investigator or collaborator\, obtaining competitive public funding. As a result of his research\, he is the author of several articles published in indexed scientific journals. \nAgenda\nA detailed agenda will be available before the conference. \nHotel\nA room block has been set up for the Patient & Family Gathering at – \nThe Renaissance Barcelona Fira Hotel\nPlaza Europa\, 50-52\, L’Hospitalet de Llobregat\,\nBarcelona\, Spain\, 08902 \nPlease make your reservations using the link below before the hotel deadline. \nBook your group rate for ECD Global Alliance Conference \nGroup Room Rate: Single: 240 Euro/night; Double: 260 Euro/night\nHotel reservation deadline: April 21\, 2025 \nTravel\nBarcelona is served by the Josep Tarradellas Barcelona-El Prat Airport. Transportation options between the airport and the hotel include: \n\nSubway. Metro line L9 Sud connects the airport terminals T1 and T2 with the Renaissance Barcelona Fira Hotel. The hotel metro station is Europa Fira. The metro operates daily between 5 am and midnight.\nPrivate Transfer. The hotel website states that private transfer is available for 101 Euro (one way) on request.\n\nScholarship Help\nWe have a limited number of scholarships available if a patient/family member would be unable to attend due to financial reasons. If a scholarship is needed\, please contact the ECDGA at support@Erdheim-Chester.org as early as possible. You will need to include your name\, email address\, position in the community (patient\, caregiver\, family member)\, and a statement of your need. We will let everyone know what help we can provide by the end of February. \nAwareness Nomination Opportunity\nYou are encouraged to nominate leaders in the ECD community – https://ecdga.questionpro.com/2025-ECDGA-Award-Nomination. Submit a Mark Heaney Award nomination to honor the medical professional you believe has improved the lives of ECD patients by bringing awareness to ECD within the medical profession. 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. The award recipient will be announced at the ECD Celebration Evening on May 26. \nAttendee Experiences \n“We are all in the same boat\, and our journey will be better together.” \n– Susan Anderson\, ECD Family \n“I have been in health care for over 20 years and have never seen or experienced such a caring and devoted group of health care professionals and volunteers!” \n– ECD Patient in Attendance \n“I know they can’t give me a cure\, or even answer all of my questions\, but just knowing they are here for me\, and they are listening\, and they understand what I’m going through\, that’s what I needed.” \n– ECD Patient in Attendance
URL:https://www.erdheim-chester.org/event/10th-annual-ecd-patient-family-gathering/
LOCATION:The Renaissance Barcelona Fira Hotel\, Plaza Europa\, 50-52\, L'Hospitalet de Llobregat\, Barcelona\, 08902\, Spain
CATEGORIES:ECD Patient & Family Gathering
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/01/skyline-barcelona-pfg.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250513T190000
DTEND;TZID=America/Chicago:20250513T200000
DTSTAMP:20260604T150151
CREATED:20250427T171856Z
LAST-MODIFIED:20250614T002002Z
UID:10000037-1747162800-1747166400@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/
CATEGORIES:Caregiver Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Caregiver-Chat.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250505T110000
DTEND;TZID=America/Chicago:20250505T160000
DTSTAMP:20260604T150151
CREATED:20250427T173848Z
LAST-MODIFIED:20250614T001926Z
UID:10000036-1746442800-1746460800@www.erdheim-chester.org
SUMMARY:German Community Chat
DESCRIPTION:Date: May 5\, 2025\nTime: 12:00 pm \nRegister Today
URL:https://www.erdheim-chester.org/event/german-community-chat/
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:20250502T120000
DTEND;TZID=America/Chicago:20250502T130000
DTSTAMP:20260604T150151
CREATED:20250826T113024Z
LAST-MODIFIED:20250909T150936Z
UID:10000583-1746187200-1746190800@www.erdheim-chester.org
SUMMARY:The Leukemia & Lymphoma Society Support Series Part 1: Overview of Services
DESCRIPTION:Overview of the various education resources and support services provided to patients and their families and the healthcare providers that care for them.
URL:https://www.erdheim-chester.org/event/the-leukemia-lymphoma-society-support-series-part-1-overview-of-services/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Leukemia-Lymphoma-Society.png
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250429T130000
DTEND;TZID=America/Chicago:20250429T160000
DTSTAMP:20260604T150151
CREATED:20250427T171538Z
LAST-MODIFIED:20250612T033512Z
UID:10000031-1745931600-1745942400@www.erdheim-chester.org
SUMMARY:Peer-to-Peer Community Live Chat with a University of Alabama Medical Student
DESCRIPTION:Date: Apr 29\, 2025\nTime: 02:00 pm \nRegister Today
URL:https://www.erdheim-chester.org/event/peer-to-peer-community-live-chat-with-a-university-of-alabama-medical-student/
CATEGORIES:Peer-to-Peer Community Chats
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/04/Peer-to-peer-chat-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250426T100000
DTEND;TZID=America/Chicago:20250426T160000
DTSTAMP:20260604T150151
CREATED:20250427T172348Z
LAST-MODIFIED:20250614T001315Z
UID:10000033-1745661600-1745683200@www.erdheim-chester.org
SUMMARY:Spanish Community Chat
DESCRIPTION:Date: Apr 26\, 2025\nTime: 11:00 AM \nRegister Today
URL:https://www.erdheim-chester.org/event/spanish-community-chat/
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:20250423T110000
DTEND;TZID=America/Chicago:20250423T160000
DTSTAMP:20260604T150151
CREATED:20250427T172214Z
LAST-MODIFIED:20250614T001011Z
UID:10000032-1745406000-1745424000@www.erdheim-chester.org
SUMMARY:Canadian Community Chat
DESCRIPTION:Date: Apr 23\, 2025\nTime: 12:00 pm \nRegister Today
URL:https://www.erdheim-chester.org/event/canadian-community-chat/
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:20250419T123000
DTEND;TZID=America/Chicago:20250419T133000
DTSTAMP:20260604T150151
CREATED:20250418T192848Z
LAST-MODIFIED:20250614T000835Z
UID:10000030-1745065800-1745069400@www.erdheim-chester.org
SUMMARY:Grief Community Chats Event 04/19/2025
DESCRIPTION:Date: 19 April\, 2025\nTime: 01:30 pm to 02:30 pm \nRegister Today
URL:https://www.erdheim-chester.org/event/grief-community-chats-event-04-19-2025/
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:20250416T190000
DTEND;TZID=America/Chicago:20250416T190000
DTSTAMP:20260604T150151
CREATED:20250427T173159Z
LAST-MODIFIED:20250614T000710Z
UID:10000038-1744830000-1744830000@www.erdheim-chester.org
SUMMARY:Australian/New Zealand Community Chat
DESCRIPTION:Date: Apr 16\, 2025\nTime: 08:00 pm \nRegister Today
URL:https://www.erdheim-chester.org/event/australian-new-zealand-community-chat/
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:20250415T110000
DTEND;TZID=America/Chicago:20250415T160000
DTSTAMP:20260604T150151
CREATED:20250427T172921Z
LAST-MODIFIED:20250614T000600Z
UID:10000034-1744714800-1744732800@www.erdheim-chester.org
SUMMARY:Italian Community Chat
DESCRIPTION:Date: Apr 15\, 2025\nTime: 12:00 pm \nRegister Today
URL:https://www.erdheim-chester.org/event/italian-community-chat/
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:20250401T070000
DTEND;TZID=America/Chicago:20250401T160000
DTSTAMP:20260604T150151
CREATED:20250826T111525Z
LAST-MODIFIED:20250910T084446Z
UID:10000559-1743490800-1743523200@www.erdheim-chester.org
SUMMARY:The Leukemia & Lymphoma Society Support Series Part 3: Clinical Trial Support Center
DESCRIPTION: \nThe Leukemia & Lymphoma Society offers a free service called the Clinical Trial Support Center (CTSC) to help blood cancer patients\, caregivers\, and healthcare professionals find potential clinical trials and overcome enrollment barriers. This webinar will discuss the process and support Erdheim-Chester patients.
URL:https://www.erdheim-chester.org/event/the-leukemia-lymphoma-society-support-series-part-3-clinical-trial-support-center/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/The-Leukemia-Lymphoma-Society-Support-Series-Part-3.png
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END:VCALENDAR