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DTSTART;TZID=America/Chicago:20260331T130000
DTEND;TZID=America/Chicago:20260331T140000
DTSTAMP:20260604T081824
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:20260604T081825
CREATED:20260303T205509Z
LAST-MODIFIED:20260303T205509Z
UID:10001352-1774962000-1774965600@www.erdheim-chester.org
SUMMARY:צ'אט קהילתי עמית לעמית
DESCRIPTION:הירשמו עוד היום \nצ’אטים פתוחים לכל נושא דיון בגבולות הסביר. נושאים הנדונים לעתים קרובות כוללים סוגיות באבחון ECD \, טיפולים\, בדיקות\, רופאים בעלי ידע\, תסמינים\, תופעות לוואי של טיפולים\, ולפעמים סתם דיונים ידידותיים על דברים נעימים שקורים בחייהם של המשתתפים. רוב המשתתפים במפגשים מצאו קשרים וממשיכים להתכתב מחוץ למפגשי הצ’אט. המפגשים מספקים גם מבנה תמיכה לאלו המעוניינים ללמוד כמה שיותר על ECD ולספק תמיכה הדדית זה לזה.    \nאנא קראו את מדיניות ההשתתפות הווירטואלית שלנו לפני הצטרפות לפגישה או לוובינר של ECD Global Alliance. \nהערה: בדוק את אזור הזמן שלך כאן: ממיר אזורי זמן . \nלא יהיה איש מקצוע רפואי שיסייע בשיחות אלו. כל מטופל הוא ייחודי ולא ניתן להציע כאן ייעוץ רפואי; אנו מעודדים לשתף את כל הרעיונות עם רופאים. אנא קראו את מדיניות ההשתתפות הווירטואלית שלנו.
URL:https://www.erdheim-chester.org/event/%d7%a6%d7%90%d7%98-%d7%a7%d7%94%d7%99%d7%9c%d7%aa%d7%99-%d7%a2%d7%9e%d7%99%d7%aa-%d7%9c%d7%a2%d7%9e%d7%99%d7%aa-9/
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Peer-to-Peer-Chat-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260331T130000
DTEND;TZID=America/Chicago:20260331T140000
DTSTAMP:20260604T081825
CREATED:20260303T205509Z
LAST-MODIFIED:20260303T205509Z
UID:10001354-1774962000-1774965600@www.erdheim-chester.org
SUMMARY:पीयर-टू-पीयर सामुदायिक चैट
DESCRIPTION:आज ही पंजीकृत करें \nचैट किसी भी चर्चा विषय के लिए खुली हैं। अक्सर चर्चा किए जाने वाले विषयों में ECD निदान मुद्दे\, उपचार\, परीक्षण\, जानकार डॉक्टर\, लक्षण\, उपचार के दुष्प्रभाव और कभी-कभी प्रतिभागियों के जीवन में होने वाली सुखद चीजों के बारे में दोस्ताना चर्चा शामिल होती है। सत्र में भाग लेने वाले अधिकांश लोगों ने कनेक्शन पाया है और चैट सत्रों के बाहर भी पत्राचार करना जारी रखते हैं। बैठकें उन लोगों के लिए एक सहायता संरचना भी प्रदान करती हैं जो ECD के बारे में जितना संभव हो उतना सीखने और एक-दूसरे को पारस्परिक सहायता प्रदान करने में रुचि रखते हैं।    \nकृपया ECD ग्लोबल अलायंस की बैठक या वेबिनार में शामिल होने से पहले हमारी वर्चुअल भागीदारी नीति पढ़ें। \nनोट: अपना समय क्षेत्र यहां जांचें: समय क्षेत्र परिवर्तक । \nइन कॉल्स में सहायता करने के लिए कोई मेडिकल प्रोफेशनल नहीं होगा। हर मरीज़ अलग होता है और यहाँ मेडिकल सलाह नहीं दी जा सकती; हम सभी विचारों को डॉक्टरों के साथ साझा करने के लिए प्रोत्साहित करते हैं। कृपया हमारी वर्चुअल भागीदारी नीति पढ़ें।
URL:https://www.erdheim-chester.org/event/%e0%a4%aa%e0%a5%80%e0%a4%af%e0%a4%b0-%e0%a4%9f%e0%a5%82-%e0%a4%aa%e0%a5%80%e0%a4%af%e0%a4%b0-%e0%a4%b8%e0%a4%be%e0%a4%ae%e0%a5%81%e0%a4%a6%e0%a4%be%e0%a4%af%e0%a4%bf%e0%a4%95-%e0%a4%9a%e0%a5%88-9/
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Peer-to-Peer-Chat-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260325T210000
DTEND;TZID=America/Chicago:20260325T220000
DTSTAMP:20260604T081825
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:20260324T170000
DTEND;TZID=America/Chicago:20260324T180000
DTSTAMP:20260604T081825
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
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2026/03/download-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260319T110000
DTEND;TZID=America/Chicago:20260319T120000
DTSTAMP:20260604T081825
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:20260604T081825
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/
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:20260317T110000
DTEND;TZID=America/Chicago:20260317T120000
DTSTAMP:20260604T081825
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:20260604T081825
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:20260310T130000
DTEND;TZID=America/Chicago:20260310T140000
DTSTAMP:20260604T081825
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:20260224T130000
DTEND;TZID=America/Chicago:20260224T140000
DTSTAMP:20260604T081825
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:20260223T010000
DTEND;TZID=America/Chicago:20260223T020000
DTSTAMP:20260604T081825
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:20260219T130000
DTEND;TZID=America/Chicago:20260219T140000
DTSTAMP:20260604T081825
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:20260219T110000
DTEND;TZID=America/Chicago:20260219T120000
DTSTAMP:20260604T081825
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:20260217T110000
DTEND;TZID=America/Chicago:20260217T120000
DTSTAMP:20260604T081825
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:20260210T130000
DTEND;TZID=America/Chicago:20260210T140000
DTSTAMP:20260604T081825
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:20260129T130000
DTEND;TZID=America/Chicago:20260129T140000
DTSTAMP:20260604T081825
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:20260129T110000
DTEND;TZID=America/Chicago:20260129T120000
DTSTAMP:20260604T081825
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:20260127T130000
DTEND;TZID=America/Chicago:20260127T140000
DTSTAMP:20260604T081825
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:20260126T010000
DTEND;TZID=America/Chicago:20260126T020000
DTSTAMP:20260604T081825
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:20260121T110000
DTEND;TZID=America/Chicago:20260121T120000
DTSTAMP:20260604T081825
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:20260120T110000
DTEND;TZID=America/Chicago:20260120T120000
DTSTAMP:20260604T081825
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:20260115T110000
DTEND;TZID=America/Chicago:20260115T120000
DTSTAMP:20260604T081825
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:20260113T130000
DTEND;TZID=America/Chicago:20260113T140000
DTSTAMP:20260604T081825
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:20260109T080000
DTEND;TZID=America/Chicago:20260109T090000
DTSTAMP:20260604T081825
CREATED:20251224T155248Z
LAST-MODIFIED:20251224T155454Z
UID:10001087-1767945600-1767949200@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-3/
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:20251230T130000
DTEND;TZID=America/Chicago:20251230T140000
DTSTAMP:20260604T081825
CREATED:20251205T214040Z
LAST-MODIFIED:20251205T214040Z
UID:10001052-1767099600-1767103200@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-6/
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:20251216T110000
DTEND;TZID=America/Chicago:20251216T120000
DTSTAMP:20260604T081825
CREATED:20251105T035651Z
LAST-MODIFIED:20251105T035714Z
UID:10000991-1765882800-1765886400@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-4/
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:20251215T010000
DTEND;TZID=America/Chicago:20251215T020000
DTSTAMP:20260604T081825
CREATED:20251205T214302Z
LAST-MODIFIED:20251205T214302Z
UID:10001075-1765760400-1765764000@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-7/
CATEGORIES:Australian and New Zealand Community Chats
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/11/download.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20251209T190000
DTEND;TZID=America/Chicago:20251209T200000
DTSTAMP:20260604T081825
CREATED:20251205T213938Z
LAST-MODIFIED:20251205T213938Z
UID:10001051-1765306800-1765310400@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-7/
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:20251201T170000
DTEND;TZID=America/Chicago:20251201T180000
DTSTAMP:20260604T081825
CREATED:20251111T210318Z
LAST-MODIFIED:20251112T153710Z
UID:10001027-1764608400-1764612000@www.erdheim-chester.org
SUMMARY:Topic: Erdheim-Chester Disease (ECD): Decoding diagnosis and treatments
DESCRIPTION:Speaker: Jerome Razanamahery\, MD\nDijon University Hospital\nDate: December 1\, 2025\nTime: 5:00 PM CET (UTC +1) (Paris Time) \nDr. Razanamahery is an expert in internal medicine with a recognized specialization in the field of rare histiocytoses\, including Erdheim-Chester Disease (ECD). He is a clinician-researcher at the University Hospital Center of Dijon\, where he heads the unit dedicated to histiocytic disorders. \nWith many years of experience and under the mentorship of Pr Haroche\, Dr. Razanamahery actively participates in clinical research and is a member of national and international reference networks on histiocytoses. His commitment is to provide cutting-edge care while ensuring that every patient and their family receive clear information and personalized support to navigate the complexity of this disease as effectively as possible.\nRegister Here
URL:https://www.erdheim-chester.org/event/topic-erdheim-chester-disease-ecd-decoding-diagnosis-and-treatments/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/11/download-1.jpg
END:VEVENT
END:VCALENDAR