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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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TZID:America/Chicago
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DTSTART:20250309T080000
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260113T130000
DTEND;TZID=America/Chicago:20260113T140000
DTSTAMP:20260604T124730
CREATED:20251224T160047Z
LAST-MODIFIED:20251224T160047Z
UID:10001099-1768309200-1768312800@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-8/
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:20260115T110000
DTEND;TZID=America/Chicago:20260115T120000
DTSTAMP:20260604T124730
CREATED:20251224T160210Z
LAST-MODIFIED:20251224T160210Z
UID:10001111-1768474800-1768478400@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-5/
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:20260120T110000
DTEND;TZID=America/Chicago:20260120T120000
DTSTAMP:20260604T124730
CREATED:20251224T160906Z
LAST-MODIFIED:20251224T160906Z
UID:10001123-1768906800-1768910400@www.erdheim-chester.org
SUMMARY:Italian Community Chat
DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy.
URL:https://www.erdheim-chester.org/event/italian-community-chat-2/
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:20260121T110000
DTEND;TZID=America/Chicago:20260121T120000
DTSTAMP:20260604T124730
CREATED:20251224T161817Z
LAST-MODIFIED:20251224T161817Z
UID:10001135-1768993200-1768996800@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-7/
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:20260126T010000
DTEND;TZID=America/Chicago:20260126T020000
DTSTAMP:20260604T124730
CREATED:20251224T162503Z
LAST-MODIFIED:20251224T162503Z
UID:10001147-1769389200-1769392800@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-8/
CATEGORIES:Australian and New Zealand Community Chats
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/12/A-N.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260127T130000
DTEND;TZID=America/Chicago:20260127T140000
DTSTAMP:20260604T124730
CREATED:20260114T144438Z
LAST-MODIFIED:20260114T144438Z
UID:10001172-1769518800-1769522400@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-7/
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:20260129T110000
DTEND;TZID=America/Chicago:20260129T120000
DTSTAMP:20260604T124730
CREATED:20260114T144340Z
LAST-MODIFIED:20260114T144340Z
UID:10001171-1769684400-1769688000@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-3/
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:20260129T130000
DTEND;TZID=America/Chicago:20260129T140000
DTSTAMP:20260604T124730
CREATED:20260114T135239Z
LAST-MODIFIED:20260114T142020Z
UID:10001159-1769691600-1769695200@www.erdheim-chester.org
SUMMARY:Topic: Erdheim-Chester Disease (ECD): A Nephrology Perspective
DESCRIPTION:Speaker: Mo Atta\, MD\, MPH\nJohns Hopkins Hospital\nDepartment of Nephrology\nDate: January 29\, 2026\nTime: 1:00 PM CST \nDr. Mohamed G. Atta is a Professor of Medicine at Johns Hopkins University where he’s a practicing Nephrologist. He trained in nephrology at the Urology and Nephrology Center at Mansoura University and at Johns Hopkins. Dr. Atta also holds a Master of Public Health degree from Johns Hopkins and is a member of multiple professional organizations\, including the American Society of Nephrology. He has been the principal investigator on several studies\, serves as a peer reviewer for numerous medical journals\, and has authored many articles across a range of scientific publications. \nRegister Here
URL:https://www.erdheim-chester.org/event/topic-rdheim-chester-disease-ecd-a-nephrology-perspective/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2026/01/download-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260210T130000
DTEND;TZID=America/Chicago:20260210T140000
DTSTAMP:20260604T124730
CREATED:20260201T212302Z
LAST-MODIFIED:20260201T212302Z
UID:10001195-1770728400-1770732000@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-9/
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:20260217T110000
DTEND;TZID=America/Chicago:20260217T120000
DTSTAMP:20260604T124730
CREATED:20260201T212402Z
LAST-MODIFIED:20260201T212402Z
UID:10001196-1771326000-1771329600@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-6/
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:20260219T110000
DTEND;TZID=America/Chicago:20260219T120000
DTSTAMP:20260604T124730
CREATED:20260201T212520Z
LAST-MODIFIED:20260201T212520Z
UID:10001197-1771498800-1771502400@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-8/
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:20260219T130000
DTEND;TZID=America/Chicago:20260219T140000
DTSTAMP:20260604T124730
CREATED:20260201T213954Z
LAST-MODIFIED:20260201T214027Z
UID:10001279-1771506000-1771509600@www.erdheim-chester.org
SUMMARY:Topic: Managing Pain\, Fatigue\, & Depression  in ECD
DESCRIPTION:Speaker: Kevin O’Brien\nRN\, MS-CRNP\, Nurse Practitioner\,\nClinical Investigator\, Genome Research Institute\,\nNational Institutes of Health\nDate: February 19\, 2026\nTime: 1:00 PM CST \nKevin O’Brien is a nurse practitioner and clinical investigator at the National Human Genome Research Institute (NHGRI) of the National Institutes of Health in Bethesda\, Maryland. He earned his Bachelor of Science degree from Johns Hopkins University and his Master of Science and Nurse Practitioner degree from the University of Maryland. \nKevin has played a key role in NHGRI clinical research\, including protocol 15-HG-0006\, a clinical trial investigating dabrafenib and trametinib in BRAF-positive patients with Erdheim-Chester disease (ECD)\, as well as the Natural History of ECD study. \nRegister Here
URL:https://www.erdheim-chester.org/event/topic-managing-pain-fatigue-depression-in-ecd/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2026/02/latest.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260223T010000
DTEND;TZID=America/Chicago:20260223T020000
DTSTAMP:20260604T124730
CREATED:20260201T212637Z
LAST-MODIFIED:20260201T212637Z
UID:10001229-1771808400-1771812000@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-9/
CATEGORIES:Australian and New Zealand Community Chats
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/12/A-N.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260224T130000
DTEND;TZID=America/Chicago:20260224T140000
DTSTAMP:20260604T124730
CREATED:20260201T212821Z
LAST-MODIFIED:20260201T212821Z
UID:10001242-1771938000-1771941600@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-8/
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:20260310T130000
DTEND;TZID=America/Chicago:20260310T140000
DTSTAMP:20260604T124730
CREATED:20260303T204710Z
LAST-MODIFIED:20260303T204710Z
UID:10001291-1773147600-1773151200@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-10/
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:20260317T110000
DTEND;TZID=America/Chicago:20260317T120000
DTSTAMP:20260604T124730
CREATED:20260303T204829Z
LAST-MODIFIED:20260303T204829Z
UID:10001294-1773745200-1773748800@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-7/
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:20260317T110000
DTEND;TZID=America/Chicago:20260317T120000
DTSTAMP:20260604T124730
CREATED:20260303T204829Z
LAST-MODIFIED:20260303T204829Z
UID:10001313-1773745200-1773748800@www.erdheim-chester.org
SUMMARY:Chat della comunità spagnola
DESCRIPTION:Registrati oggi \nLe chat sono aperte a qualsiasi argomento di discussione\, purché ragionevole. Spesso gli argomenti discussi includono i problemi di diagnosi di ECD\, i trattamenti\, gli esami\, i medici competenti\, i sintomi\, gli effetti collaterali dei trattamenti e\, a volte\, semplicemente discussioni amichevoli sulle cose piacevoli che accadono nella vita dei partecipanti. La maggior parte di coloro che partecipano alle sessioni hanno trovato dei legami e continuano a corrispondere anche al di fuori delle sessioni di chat. Gli incontri forniscono anche una struttura di supporto per coloro che sono interessati a imparare il più possibile su ECD e a darsi reciproco sostegno.    \nPrima di partecipare a una riunione o a un webinar di ECD Global Alliance\, leggi la nostra Politica di partecipazione virtuale. \nNOTA: Controlla il tuo fuso orario qui: Convertitore di fuso orario. \nNon ci sarà un medico professionista ad assistere a queste chiamate. Ogni paziente è unico e non è possibile offrire consigli medici in questa sede; incoraggiamo tutte le idee a essere condivise con i medici. Leggi la nostra Politica di partecipazione virtuale.
URL:https://www.erdheim-chester.org/event/chat-della-comunita-spagnola-8/
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:20260319T110000
DTEND;TZID=America/Chicago:20260319T120000
DTSTAMP:20260604T124730
CREATED:20260303T205117Z
LAST-MODIFIED:20260303T205117Z
UID:10001316-1773918000-1773921600@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-9/
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:20260319T110000
DTEND;TZID=America/Chicago:20260319T120000
DTSTAMP:20260604T124730
CREATED:20260303T205117Z
LAST-MODIFIED:20260303T205117Z
UID:10001327-1773918000-1773921600@www.erdheim-chester.org
SUMMARY:Chat de la Comunidad Canadiense
DESCRIPTION:Regístrate hoy \nLos chats están abiertos a cualquier tema de debate dentro de lo razonable. Entre los temas que se debaten a menudo se incluyen: ECD cuestiones de diagnóstico\, tratamientos\, pruebas\, médicos expertos\, síntomas\, efectos secundarios de los tratamientos y\, a veces\, simplemente discusiones amistosas sobre cosas agradables que ocurren en la vida de los participantes.  La mayoría de los que asisten a las sesiones han encontrado conexiones y siguen manteniendo correspondencia fuera de las sesiones de chat. Las reuniones también proporcionan una estructura de apoyo para quienes están interesados en aprender todo lo que puedan sobre ECD y proporcionarse apoyo mutuo.  \nLee nuestra Política de participación virtual antes de unirte a una reunión o seminario web de la Alianza Global ECD. \nNOTA: Comprueba tu zona horaria aquí: Convertidor de husos horarios. \nNo habrá ningún profesional médico asistiendo a estas llamadas. Cada paciente es único y aquí no se pueden ofrecer consejos médicos; animamos a que todas las ideas se compartan con los médicos. Lee nuestra Política de participación virtual.
URL:https://www.erdheim-chester.org/event/chat-de-la-comunidad-canadiense-10/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260324T170000
DTEND;TZID=America/Chicago:20260324T180000
DTSTAMP:20260604T124730
CREATED:20260313T195743Z
LAST-MODIFIED:20260313T195840Z
UID:10001357-1774371600-1774375200@www.erdheim-chester.org
SUMMARY:Argomento: Vivere con la malattia di Erdheim-Chester: dalla diagnosi alla terapia
DESCRIPTION:Relatore: Dott. Francesco Peyronel\nNefrologo\, Centro Medico Corfù71\, Brescia\nRicercatore clinico\, PhD candidate presso\nl’Università di Firenze\nDate: 24 marzo 2026\nOrario: 17:00 CET (Firenze) \nLa malattia di Erdheim-Chester è una malattia rara che può coinvolgere diversi organi del corpo e richiede spesso un approccio multidisciplinare. In questo webinar verranno spiegati in modo semplice i principali aspetti della malattia: come si arriva alla diagnosi\, quali terapie sono oggi disponibili e come viene gestita nel tempo. L’obiettivo è aiutare pazienti e caregiver a comprendere meglio la malattia e il percorso di cura. \nBiografia: \nIl Dott. Francesco Peyronel è medico specialista in nefrologia e svolge attività clinica e di ricerca nel campo delle malattie renali e delle malattie rare. Ha conseguito la specializzazione presso l’Università di Parma e sta completando il dottorato di ricerca in scienze cliniche presso l’Università di Firenze. La sua attività di ricerca è dedicata in particolare allo studio delle malattie rare sistemiche con coinvolgimento renale\, tra cui la malattia di Erdheim-Chester. Collabora con gruppi di ricerca internazionali e partecipa a progetti volti a migliorare la comprensione della malattia e la gestione clinica dei pazienti. \nRegister Here
URL:https://www.erdheim-chester.org/event/argomento-vivere-con-la-malattia-di-erdheim-chester-dalla-diagnosi-alla-terapia/
CATEGORIES:Webinars
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260325T210000
DTEND;TZID=America/Chicago:20260325T220000
DTSTAMP:20260604T124730
CREATED:20260303T205321Z
LAST-MODIFIED:20260303T205342Z
UID:10001329-1774472400-1774476000@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-10/
CATEGORIES:Australian and New Zealand Community Chats
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/12/A-N.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260331T130000
DTEND;TZID=America/Chicago:20260331T140000
DTSTAMP:20260604T124730
CREATED:20260303T205509Z
LAST-MODIFIED:20260303T205509Z
UID:10001346-1774962000-1774965600@www.erdheim-chester.org
SUMMARY:Chat communautaire Peer-to-Peer
DESCRIPTION:Inscrivez-vous dès aujourd’hui \nLes chats sont ouverts à tous les sujets de discussion\, dans la limite du raisonnable. Les sujets souvent abordés sont les suivants : ECD\, les problèmes de diagnostic\, les traitements\, les tests\, les médecins compétents\, les symptômes\, les effets secondaires des traitements\, et parfois simplement des discussions amicales sur les choses agréables qui se passent dans la vie des participants. La plupart des participants aux sessions ont trouvé des liens et continuent à correspondre en dehors des sessions de chat. Les réunions constituent également une structure de soutien pour les personnes désireuses d’en apprendre le plus possible sur ECD et de se soutenir mutuellement.    \nVeuillez lire notre politique de participation virtuelle avant de vous joindre à une réunion ou à un webinaire de l’Alliance mondiale ECD. \nNOTE : Vérifiez votre fuseau horaire ici : Convertisseur de fuseau horaire. \nAucun professionnel de la santé n’assistera à ces appels. Chaque patient est unique et il n’est pas possible de donner des conseils médicaux ici ; nous vous encourageons à partager vos idées avec des médecins. Veuillez lire notre politique de participation virtuelle.
URL:https://www.erdheim-chester.org/event/chat-communautaire-peer-to-peer-9/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260331T130000
DTEND;TZID=America/Chicago:20260331T140000
DTSTAMP:20260604T124730
CREATED:20260303T205509Z
LAST-MODIFIED:20260303T205509Z
UID:10001349-1774962000-1774965600@www.erdheim-chester.org
SUMMARY:Κοινοτική συνομιλία μεταξύ ομοτίμων
DESCRIPTION:Εγγραφείτε σήμερα \nΟι συνομιλίες είναι ανοιχτές για οποιοδήποτε θέμα συζήτησης εντός λογικών ορίων. Συχνά τα θέματα που συζητούνται περιλαμβάνουν θέματα διάγνωσης ECD\, θεραπείες\, εξετάσεις\, ενημερωμένους γιατρούς\, συμπτώματα\, παρενέργειες της θεραπείας και μερικές φορές απλά φιλικές συζητήσεις για ευχάριστα πράγματα που συμβαίνουν στη ζωή των συμμετεχόντων. Οι περισσότεροι που παρακολουθούν τις συνεδρίες έχουν βρει συνδέσεις και συνεχίζουν να αλληλογραφούν και εκτός των συνεδριών συνομιλίας. Οι συναντήσεις παρέχουν επίσης μια δομή υποστήριξης για όσους ενδιαφέρονται να μάθουν όσο το δυνατόν περισσότερα για το ECD και να παρέχουν αμοιβαία υποστήριξη ο ένας στον άλλο.    \nΠαρακαλούμε διαβάστε την Πολιτική Εικονικής Συμμετοχής πριν συμμετάσχετε σε μια συνάντηση ή διαδικτυακό σεμινάριο της ECD Global Alliance. \nΣΗΜΕΙΩΣΗ: Ελέγξτε τη ζώνη ώρας σας εδώ: Μετατροπέας Ζώνης Ώρας. \nΔεν θα υπάρχει κάποιος επαγγελματίας ιατρός που θα βοηθάει σε αυτές τις κλήσεις. Κάθε ασθενής είναι μοναδικός και εδώ δεν μπορούν να δοθούν ιατρικές συμβουλές- ενθαρρύνουμε όλες τις ιδέες να μοιράζονται με τους γιατρούς. Παρακαλούμε διαβάστε την Πολιτική Εικονικής Συμμετοχής μας.
URL:https://www.erdheim-chester.org/event/%ce%ba%ce%bf%ce%b9%ce%bd%ce%bf%cf%84%ce%b9%ce%ba%ce%ae-%cf%83%cf%85%ce%bd%ce%bf%ce%bc%ce%b9%ce%bb%ce%af%ce%b1-%ce%bc%ce%b5%cf%84%ce%b1%ce%be%cf%8d-%ce%bf%ce%bc%ce%bf%cf%84%ce%af%ce%bc%cf%89%ce%bd-9/
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Peer-to-Peer-Chat-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260331T130000
DTEND;TZID=America/Chicago:20260331T140000
DTSTAMP:20260604T124730
CREATED:20260303T205509Z
LAST-MODIFIED:20260303T205509Z
UID:10001352-1774962000-1774965600@www.erdheim-chester.org
SUMMARY:צ'אט קהילתי עמית לעמית
DESCRIPTION:הירשמו עוד היום \nצ’אטים פתוחים לכל נושא דיון בגבולות הסביר. נושאים הנדונים לעתים קרובות כוללים סוגיות באבחון ECD \, טיפולים\, בדיקות\, רופאים בעלי ידע\, תסמינים\, תופעות לוואי של טיפולים\, ולפעמים סתם דיונים ידידותיים על דברים נעימים שקורים בחייהם של המשתתפים. רוב המשתתפים במפגשים מצאו קשרים וממשיכים להתכתב מחוץ למפגשי הצ’אט. המפגשים מספקים גם מבנה תמיכה לאלו המעוניינים ללמוד כמה שיותר על ECD ולספק תמיכה הדדית זה לזה.    \nאנא קראו את מדיניות ההשתתפות הווירטואלית שלנו לפני הצטרפות לפגישה או לוובינר של ECD Global Alliance. \nהערה: בדוק את אזור הזמן שלך כאן: ממיר אזורי זמן . \nלא יהיה איש מקצוע רפואי שיסייע בשיחות אלו. כל מטופל הוא ייחודי ולא ניתן להציע כאן ייעוץ רפואי; אנו מעודדים לשתף את כל הרעיונות עם רופאים. אנא קראו את מדיניות ההשתתפות הווירטואלית שלנו.
URL:https://www.erdheim-chester.org/event/%d7%a6%d7%90%d7%98-%d7%a7%d7%94%d7%99%d7%9c%d7%aa%d7%99-%d7%a2%d7%9e%d7%99%d7%aa-%d7%9c%d7%a2%d7%9e%d7%99%d7%aa-9/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260331T130000
DTEND;TZID=America/Chicago:20260331T140000
DTSTAMP:20260604T124730
CREATED:20260303T205509Z
LAST-MODIFIED:20260303T205509Z
UID:10001354-1774962000-1774965600@www.erdheim-chester.org
SUMMARY:पीयर-टू-पीयर सामुदायिक चैट
DESCRIPTION:आज ही पंजीकृत करें \nचैट किसी भी चर्चा विषय के लिए खुली हैं। अक्सर चर्चा किए जाने वाले विषयों में ECD निदान मुद्दे\, उपचार\, परीक्षण\, जानकार डॉक्टर\, लक्षण\, उपचार के दुष्प्रभाव और कभी-कभी प्रतिभागियों के जीवन में होने वाली सुखद चीजों के बारे में दोस्ताना चर्चा शामिल होती है। सत्र में भाग लेने वाले अधिकांश लोगों ने कनेक्शन पाया है और चैट सत्रों के बाहर भी पत्राचार करना जारी रखते हैं। बैठकें उन लोगों के लिए एक सहायता संरचना भी प्रदान करती हैं जो ECD के बारे में जितना संभव हो उतना सीखने और एक-दूसरे को पारस्परिक सहायता प्रदान करने में रुचि रखते हैं।    \nकृपया ECD ग्लोबल अलायंस की बैठक या वेबिनार में शामिल होने से पहले हमारी वर्चुअल भागीदारी नीति पढ़ें। \nनोट: अपना समय क्षेत्र यहां जांचें: समय क्षेत्र परिवर्तक । \nइन कॉल्स में सहायता करने के लिए कोई मेडिकल प्रोफेशनल नहीं होगा। हर मरीज़ अलग होता है और यहाँ मेडिकल सलाह नहीं दी जा सकती; हम सभी विचारों को डॉक्टरों के साथ साझा करने के लिए प्रोत्साहित करते हैं। कृपया हमारी वर्चुअल भागीदारी नीति पढ़ें।
URL:https://www.erdheim-chester.org/event/%e0%a4%aa%e0%a5%80%e0%a4%af%e0%a4%b0-%e0%a4%9f%e0%a5%82-%e0%a4%aa%e0%a5%80%e0%a4%af%e0%a4%b0-%e0%a4%b8%e0%a4%be%e0%a4%ae%e0%a5%81%e0%a4%a6%e0%a4%be%e0%a4%af%e0%a4%bf%e0%a4%95-%e0%a4%9a%e0%a5%88-9/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260331T130000
DTEND;TZID=America/Chicago:20260331T140000
DTSTAMP:20260604T124730
CREATED:20260303T205509Z
LAST-MODIFIED:20260303T205509Z
UID:10001341-1774962000-1774965600@www.erdheim-chester.org
SUMMARY:Peer-to-Peer Community Chat
DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy.
URL:https://www.erdheim-chester.org/event/peer-to-peer-community-chat-9/
CATEGORIES:Peer-to-Peer Community Chats
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260407T130000
DTEND;TZID=America/Chicago:20260407T140000
DTSTAMP:20260604T124730
CREATED:20260325T031255Z
LAST-MODIFIED:20260325T031255Z
UID:10001369-1775566800-1775570400@www.erdheim-chester.org
SUMMARY:Topic: Living with ECD and Pain: Communicating\, Coping\, and Finding Support
DESCRIPTION:Speaker: Nicole Hemmenway\nChief Executive Officer\nU.S. Pain Foundation\nDate: April 7\, 2026\nTime: 1:00 PM CST \nNicole Hemmenway is the Chief Executive Officer of the U.S. Pain Foundation\, a patient-led nonprofit working to support the more than 60 million Americans living with chronic pain. A passionate advocate and nonprofit leader\, Nicole brings both professional expertise and lived experience to her work\, guiding the organization’s mission to educate\, empower\, connect\, and advocate for individuals living with pain\, as well as their care partners and providers. \nUnder her leadership\, the U.S. Pain Foundation has expanded access to peer support programs\, developed nationally recognized surveys that elevate the real experiences of people living with pain\, and amplified patient voices through initiatives like the INvisible Project. She is a frequent speaker at conferences\, medical schools\, and policy forums\, where she highlights the importance of compassionate care\, peer support\, equitable access to treatment\, and the integration of patient perspectives in research and decision-making. \nNicole’s work has been recognized nationally\, including being featured in a 2015 USA Today campaign and receiving the 2017 Unsung Hero Award. She is also the author of No\, It Is Not in My Head: The Journey of a Chronic Pain Survivor from Wheelchair to Marathon. She lives in the Nashville area with her husband and three sons. \nRegister Here
URL:https://www.erdheim-chester.org/event/topic-living-with-ecd-and-pain-communicating-coping-and-finding-support/
CATEGORIES:Webinars
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260410T080000
DTEND;TZID=America/Chicago:20260410T090000
DTSTAMP:20260604T124730
CREATED:20260201T212911Z
LAST-MODIFIED:20260406T180759Z
UID:10001244-1775808000-1775811600@www.erdheim-chester.org
SUMMARY:French Community Chat
DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy.
URL:https://www.erdheim-chester.org/event/french-community-chat-4/
CATEGORIES:French Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/French-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260414T110000
DTEND;TZID=America/Chicago:20260414T120000
DTSTAMP:20260604T124730
CREATED:20260201T213033Z
LAST-MODIFIED:20260201T213033Z
UID:10001256-1776164400-1776168000@www.erdheim-chester.org
SUMMARY:Italian Community Chat
DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy.
URL:https://www.erdheim-chester.org/event/italian-community-chat-3/
CATEGORIES:Italian Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Italian-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260414T130000
DTEND;TZID=America/Chicago:20260414T140000
DTSTAMP:20260604T124730
CREATED:20260406T175156Z
LAST-MODIFIED:20260406T175156Z
UID:10001381-1776171600-1776175200@www.erdheim-chester.org
SUMMARY:Caregiver Community Chat
DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy.
URL:https://www.erdheim-chester.org/event/caregiver-community-chat-11/
CATEGORIES:Caregiver Community Chats
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END:VEVENT
END:VCALENDAR