BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Erdheim-Chester Disease Global Alliance - ECPv6.16.3//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
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
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/Chicago
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20250309T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20251102T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20260308T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20261101T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20270314T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20271107T070000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260310T130000
DTEND;TZID=America/Chicago:20260310T140000
DTSTAMP:20260604T041520
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:20260604T041520
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:20260604T041520
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:20260604T041520
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:20260604T041520
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:20260324T170000
DTEND;TZID=America/Chicago:20260324T180000
DTSTAMP:20260604T041520
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:20260325T210000
DTEND;TZID=America/Chicago:20260325T220000
DTSTAMP:20260604T041520
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:20260604T041520
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
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:20260604T041520
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/
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:20260604T041520
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:20260604T041520
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:20260604T041520
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
END:VCALENDAR