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PRODID:-//Erdheim-Chester Disease Global Alliance - ECPv6.16.3//NONSGML v1.0//EN
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X-ORIGINAL-URL:https://www.erdheim-chester.org
X-WR-CALDESC:Events for Erdheim-Chester Disease Global Alliance
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TZID:America/Chicago
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DTSTART;VALUE=DATE:20250615
DTEND;VALUE=DATE:20250716
DTSTAMP:20260605T064957
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
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250708T180000
DTEND;TZID=America/Chicago:20250708T190000
DTSTAMP:20260605T064957
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:20250711T070000
DTEND;TZID=America/Chicago:20250711T080000
DTSTAMP:20260605T064957
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:20250719T190000
DTEND;TZID=America/Chicago:20250719T200000
DTSTAMP:20260605T064957
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:20250729T130000
DTEND;TZID=America/Chicago:20250729T140000
DTSTAMP:20260605T064957
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:20250731T100000
DTEND;TZID=America/Chicago:20250731T110000
DTSTAMP:20260605T064957
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
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