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DTSTART;TZID=America/Chicago:20260407T130000
DTEND;TZID=America/Chicago:20260407T140000
DTSTAMP:20260325T031255Z
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/it/event/topic-living-with-ecd-and-pain-communicating-coping-and-finding-support/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2026/03/download45.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260410T080000
DTEND;TZID=America/Chicago:20260410T090000
DTSTAMP:20260201T212911Z
CREATED:20260201T212911Z
LAST-MODIFIED:20260201T212911Z
UID:10001261-1775808000-1775811600@www.erdheim-chester.org
SUMMARY:फ्रेंच समुदाय 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/it/event/%e0%a4%ab%e0%a5%8d%e0%a4%b0%e0%a5%87%e0%a4%82%e0%a4%9a-%e0%a4%b8%e0%a4%ae%e0%a5%81%e0%a4%a6%e0%a4%be%e0%a4%af-%e0%a4%9a%e0%a5%88%e0%a4%9f-4/
CATEGORIES:फ्रेंच समुदाय चैट
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:20260410T080000
DTEND;TZID=America/Chicago:20260410T090000
DTSTAMP:20260201T212911Z
CREATED:20260201T212911Z
LAST-MODIFIED:20260201T212911Z
UID:10001262-1775808000-1775811600@www.erdheim-chester.org
SUMMARY:צ'אט קהילתי צרפתי
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/it/event/%d7%a6%d7%90%d7%98-%d7%a7%d7%94%d7%99%d7%9c%d7%aa%d7%99-%d7%a6%d7%a8%d7%a4%d7%aa%d7%99-4/
CATEGORIES:צ'אטים בקהילה הצרפתית
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:20260410T080000
DTEND;TZID=America/Chicago:20260410T090000
DTSTAMP:20260406T180759Z
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/it/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:20260410T080000
DTEND;TZID=America/Chicago:20260410T090000
DTSTAMP:20260201T212911Z
CREATED:20260201T212911Z
LAST-MODIFIED:20260201T212911Z
UID:10001263-1775808000-1775811600@www.erdheim-chester.org
SUMMARY:Γαλλική Κοινότητα Chat
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/it/event/%ce%b3%ce%b1%ce%bb%ce%bb%ce%b9%ce%ba%ce%ae-%ce%ba%ce%bf%ce%b9%ce%bd%cf%8c%cf%84%ce%b7%cf%84%ce%b1-chat-4/
CATEGORIES:Γαλλικές κοινοτικές συνομιλίες
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:20260410T080000
DTEND;TZID=America/Chicago:20260410T090000
DTSTAMP:20260201T212911Z
CREATED:20260201T212911Z
LAST-MODIFIED:20260201T212911Z
UID:10001264-1775808000-1775811600@www.erdheim-chester.org
SUMMARY:Französisch Community Chat
DESCRIPTION:Heute registrieren \nDie Chats sind offen für jedes Diskussionsthema\, sofern es sinnvoll ist. Zu den häufig diskutierten Themen gehören ECD Diagnosen\, Behandlungen\, Tests\, sachkundige Ärzte\, Symptome\, Nebenwirkungen der Behandlung und manchmal auch nur freundliche Gespräche über angenehme Dinge im Leben der Teilnehmer. Die meisten\, die an den Sitzungen teilnehmen\, haben Kontakte geknüpft und unterhalten sich auch außerhalb der Chat-Sitzungen. Die Treffen bieten auch eine Unterstützungsstruktur für diejenigen\, die daran interessiert sind\, so viel wie möglich über ECD zu erfahren und sich gegenseitig zu unterstützen.    \nBitte lesen Sie unsere Richtlinien zur virtuellen Teilnahme\, bevor Sie an einem ECD Global Alliance Meeting oder Webinar teilnehmen. \nHINWEIS: Prüfen Sie Ihre Zeitzone hier: Zeitzonen-Konverter. \nEs wird kein medizinisches Fachpersonal bei diesen Anrufen assistieren. Jeder Patient ist einzigartig und wir können hier keine medizinischen Ratschläge geben. Wir ermutigen Sie\, alle Ideen mit Ärzten zu teilen. Bitte lesen Sie unsere Richtlinien zur virtuellen Teilnahme.
URL:https://www.erdheim-chester.org/it/event/franzoesisch-community-chat-4/
CATEGORIES:Französische 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:20260410T080000
DTEND;TZID=America/Chicago:20260410T090000
DTSTAMP:20260201T212911Z
CREATED:20260201T212911Z
LAST-MODIFIED:20260201T212911Z
UID:10001257-1775808000-1775811600@www.erdheim-chester.org
SUMMARY:Chat de la Comunidad Francesa
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/it/event/chat-de-la-comunidad-francesa-4/
CATEGORIES:Chats comunitarios en francés
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:20260410T080000
DTEND;TZID=America/Chicago:20260410T090000
DTSTAMP:20260201T212911Z
CREATED:20260201T212911Z
LAST-MODIFIED:20260201T212911Z
UID:10001265-1775808000-1775811600@www.erdheim-chester.org
SUMMARY:Chat de la communauté française
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/it/event/chat-de-la-communaute-francaise-4/
CATEGORIES:Chats de la communauté française
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:20260410T080000
DTEND;TZID=America/Chicago:20260410T090000
DTSTAMP:20260201T212911Z
CREATED:20260201T212911Z
LAST-MODIFIED:20260201T212911Z
UID:10001258-1775808000-1775811600@www.erdheim-chester.org
SUMMARY:Bate-papo da comunidade francesa
DESCRIPTION:Registre-se hoje \nOs bate-papos são abertos para qualquer tópico de discussão\, dentro do razoável. Os tópicos frequentemente discutidos incluem ECD questões de diagnóstico\, tratamentos\, testes\, médicos experientes\, sintomas\, efeitos colaterais do tratamento e\, às vezes\, apenas discussões amigáveis sobre coisas agradáveis que estão acontecendo na vida dos participantes. A maioria dos participantes das sessões encontrou conexões e continua a se corresponder fora das sessões de bate-papo. As reuniões também oferecem uma estrutura de apoio para aqueles que estão interessados em aprender o máximo possível sobre ECD e oferecer apoio mútuo.    \nLeia nossa Política de Participação Virtual antes de participar de uma reunião ou webinar da ECD Global Alliance. \nOBSERVAÇÃO: Verifique seu fuso horário aqui: Conversor de fuso horário. \nNão haverá um profissional médico auxiliando nessas chamadas. Cada paciente é único e não é possível oferecer aconselhamento médico aqui; incentivamos que todas as ideias sejam compartilhadas com os médicos. Leia nossa Política de participação virtual.
URL:https://www.erdheim-chester.org/it/event/bate-papo-da-comunidade-francesa-4/
CATEGORIES:Chats da comunidade francesa
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:20260410T080000
DTEND;TZID=America/Chicago:20260410T090000
DTSTAMP:20260201T212911Z
CREATED:20260201T212911Z
LAST-MODIFIED:20260201T212911Z
UID:10001266-1775808000-1775811600@www.erdheim-chester.org
SUMMARY:Franse Gemeenschap Chat
DESCRIPTION:Registreer vandaag \nChats staan open voor elk discussieonderwerp dat redelijk is. Vaak besproken onderwerpen zijn ECD diagnose kwesties\, behandelingen\, tests\, goed geïnformeerde artsen\, symptomen\, behandeling bijwerkingen\, en soms gewoon vriendelijke discussies over leuke dingen die gebeuren in het leven van de deelnemers. De meesten die de sessies bijwonen\, hebben connecties gevonden en blijven ook buiten de chatsessies corresponderen. De bijeenkomsten bieden ook een ondersteuningsstructuur voor degenen die zoveel mogelijk willen leren over ECD en elkaar willen steunen.    \nLees ons beleid voor virtuele deelname voordat u deelneemt aan een bijeenkomst of webinar van ECD Global Alliance. \nOPMERKING: Controleer je tijdzone hier: Tijdzoneconverter. \nEr zal geen medische professional zijn die helpt bij deze gesprekken. Elke patiënt is uniek en medisch advies kan hier niet worden gegeven; we moedigen aan om alle ideeën met artsen te delen. Lees ons Beleid voor virtuele deelname.
URL:https://www.erdheim-chester.org/it/event/franse-gemeenschap-chat-4/
CATEGORIES:Franse Gemeenschap 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:20260410T080000
DTEND;TZID=America/Chicago:20260410T090000
DTSTAMP:20260201T212911Z
CREATED:20260201T212911Z
LAST-MODIFIED:20260201T212911Z
UID:10001259-1775808000-1775811600@www.erdheim-chester.org
SUMMARY:Chat i det franske samfunnet
DESCRIPTION:Registrer deg i dag \nChattene er åpne for alle diskusjonstemaer innenfor rimelighetens grenser. ECD Ofte diskuteres temaer som diagnoser\, behandlinger\, tester\, kunnskapsrike leger\, symptomer\, bivirkninger av behandlingen og noen ganger bare vennskapelige diskusjoner om hyggelige ting som skjer i deltakernes liv. De fleste som deltar på møtene\, har funnet nye kontakter og fortsetter å korrespondere utenom chatteøktene. Møtene gir også en støttestruktur for dem som er interessert i å lære så mye som mulig om ECD og gi hverandre gjensidig støtte.    \nVennligst les våre retningslinjer for virtuell deltakelse før du deltar på et møte eller webinar på ECD Global Alliance. \nMERK: Sjekk tidssonen din her: Tidssoneomregner. \nDet vil ikke være noen medisinsk fagperson som bistår i disse samtalene. Hver pasient er unik\, og vi kan ikke gi medisinske råd her; vi oppfordrer til å dele alle ideer med leger. Vennligst les våre retningslinjer for virtuell deltakelse.
URL:https://www.erdheim-chester.org/it/event/chat-i-det-franske-samfunnet-4/
CATEGORIES:Chatter i det franske samfunnet
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:20260410T080000
DTEND;TZID=America/Chicago:20260410T090000
DTSTAMP:20260201T212911Z
CREATED:20260201T212911Z
LAST-MODIFIED:20260201T212911Z
UID:10001267-1775808000-1775811600@www.erdheim-chester.org
SUMMARY:法語社區聊天
DESCRIPTION:立即註冊 \n在合理範圍內，聊天對任何討論主題都開放。經常討論的話題包括 ECD 診斷問題、治療、測試、知識淵博的醫生、癥狀、治療副作用，有時只是關於參與者生活中發生的愉快事情的友好討論。大多數參加會議的人都找到了聯繫，並在聊天會議之外繼續通信。這些會議還為那些有興趣盡可能多地瞭解 ECD 並相互支援的人提供了一個支持結構。    \n在加入ECD全球聯盟會議或網路研討會之前，請閱讀我們的虛擬參與政策。 \n注意： 在此處查看您的時區： 時區轉換器。 \n不會有醫療專業人員協助接聽這些電話。每個患者都是獨一無二的，這裡不能提供醫療建議;我們鼓勵與醫生分享所有想法。請閱讀我們的 虛擬參與政策。
URL:https://www.erdheim-chester.org/it/event/%e6%b3%95%e8%aa%9e%e7%a4%be%e5%8d%80%e8%81%8a%e5%a4%a9-4/
CATEGORIES:法語社區聊天
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:20260410T080000
DTEND;TZID=America/Chicago:20260410T090000
DTSTAMP:20260201T212911Z
CREATED:20260201T212911Z
LAST-MODIFIED:20260201T212911Z
UID:10001260-1775808000-1775811600@www.erdheim-chester.org
SUMMARY:Chat della comunità francese
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/it/event/chat-della-comunita-francese-4/
CATEGORIES:Chat della comunità francese
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:20260201T213033Z
CREATED:20260201T213033Z
LAST-MODIFIED:20260201T213033Z
UID:10001269-1776164400-1776168000@www.erdheim-chester.org
SUMMARY:Ιταλική Κοινότητα Chat
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/it/event/%ce%b9%cf%84%ce%b1%ce%bb%ce%b9%ce%ba%ce%ae-%ce%ba%ce%bf%ce%b9%ce%bd%cf%8c%cf%84%ce%b7%cf%84%ce%b1-chat-3/
CATEGORIES:Συζητήσεις της ιταλικής κοινότητας
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:20260414T110000
DTEND;TZID=America/Chicago:20260414T120000
DTSTAMP:20260201T213033Z
CREATED:20260201T213033Z
LAST-MODIFIED:20260201T213033Z
UID:10001277-1776164400-1776168000@www.erdheim-chester.org
SUMMARY:इतालवी समुदाय 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/it/event/%e0%a4%87%e0%a4%a4%e0%a4%be%e0%a4%b2%e0%a4%b5%e0%a5%80-%e0%a4%b8%e0%a4%ae%e0%a5%81%e0%a4%a6%e0%a4%be%e0%a4%af-%e0%a4%9a%e0%a5%88%e0%a4%9f-3/
CATEGORIES:इतालवी समुदाय चैट
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:20260414T110000
DTEND;TZID=America/Chicago:20260414T120000
DTSTAMP:20260201T213033Z
CREATED:20260201T213033Z
LAST-MODIFIED:20260201T213033Z
UID:10001270-1776164400-1776168000@www.erdheim-chester.org
SUMMARY:Italienisch-Community-Chat
DESCRIPTION:Heute registrieren \nDie Chats sind offen für jedes Diskussionsthema\, sofern es sinnvoll ist. Zu den häufig diskutierten Themen gehören ECD Diagnosen\, Behandlungen\, Tests\, sachkundige Ärzte\, Symptome\, Nebenwirkungen der Behandlung und manchmal auch nur freundliche Gespräche über angenehme Dinge im Leben der Teilnehmer. Die meisten\, die an den Sitzungen teilnehmen\, haben Kontakte geknüpft und unterhalten sich auch außerhalb der Chat-Sitzungen. Die Treffen bieten auch eine Unterstützungsstruktur für diejenigen\, die daran interessiert sind\, so viel wie möglich über ECD zu erfahren und sich gegenseitig zu unterstützen.    \nBitte lesen Sie unsere Richtlinien zur virtuellen Teilnahme\, bevor Sie an einem ECD Global Alliance Meeting oder Webinar teilnehmen. \nHINWEIS: Prüfen Sie Ihre Zeitzone hier: Zeitzonen-Konverter. \nEs wird kein medizinisches Fachpersonal bei diesen Anrufen assistieren. Jeder Patient ist einzigartig und wir können hier keine medizinischen Ratschläge geben. Wir ermutigen Sie\, alle Ideen mit Ärzten zu teilen. Bitte lesen Sie unsere Richtlinien zur virtuellen Teilnahme.
URL:https://www.erdheim-chester.org/it/event/italienisch-community-chat-3/
CATEGORIES:Chats der italienischen Gemeinschaft
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:20260414T110000
DTEND;TZID=America/Chicago:20260414T120000
DTSTAMP:20260201T213033Z
CREATED:20260201T213033Z
LAST-MODIFIED:20260201T213033Z
UID:10001278-1776164400-1776168000@www.erdheim-chester.org
SUMMARY:義大利社群聊天室
DESCRIPTION:立即註冊 \n在合理範圍內，聊天對任何討論主題都開放。經常討論的話題包括 ECD 診斷問題、治療、測試、知識淵博的醫生、癥狀、治療副作用，有時只是關於參與者生活中發生的愉快事情的友好討論。大多數參加會議的人都找到了聯繫，並在聊天會議之外繼續通信。這些會議還為那些有興趣盡可能多地瞭解 ECD 並相互支援的人提供了一個支持結構。    \n在加入ECD全球聯盟會議或網路研討會之前，請閱讀我們的虛擬參與政策。 \n注意： 在此處查看您的時區： 時區轉換器。 \n不會有醫療專業人員協助接聽這些電話。每個患者都是獨一無二的，這裡不能提供醫療建議;我們鼓勵與醫生分享所有想法。請閱讀我們的 虛擬參與政策。
URL:https://www.erdheim-chester.org/it/event/%e7%be%a9%e5%a4%a7%e5%88%a9%e7%a4%be%e7%be%a4%e8%81%8a%e5%a4%a9%e5%ae%a4-2/
CATEGORIES:義大利社區聊天
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:20260414T110000
DTEND;TZID=America/Chicago:20260414T120000
DTSTAMP:20260201T213033Z
CREATED:20260201T213033Z
LAST-MODIFIED:20260201T213033Z
UID:10001271-1776164400-1776168000@www.erdheim-chester.org
SUMMARY:Chat de la communauté italienne
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/it/event/chat-de-la-communaute-italienne-3/
CATEGORIES:Chats de la communauté italienne
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:20260414T110000
DTEND;TZID=America/Chicago:20260414T120000
DTSTAMP:20260201T213033Z
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/it/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:20260414T110000
DTEND;TZID=America/Chicago:20260414T120000
DTSTAMP:20260201T213033Z
CREATED:20260201T213033Z
LAST-MODIFIED:20260201T213033Z
UID:10001272-1776164400-1776168000@www.erdheim-chester.org
SUMMARY:Chat met de Italiaanse gemeenschap
DESCRIPTION:Registreer vandaag \nChats staan open voor elk discussieonderwerp dat redelijk is. Vaak besproken onderwerpen zijn ECD diagnose kwesties\, behandelingen\, tests\, goed geïnformeerde artsen\, symptomen\, behandeling bijwerkingen\, en soms gewoon vriendelijke discussies over leuke dingen die gebeuren in het leven van de deelnemers. De meesten die de sessies bijwonen\, hebben connecties gevonden en blijven ook buiten de chatsessies corresponderen. De bijeenkomsten bieden ook een ondersteuningsstructuur voor degenen die zoveel mogelijk willen leren over ECD en elkaar willen steunen.    \nLees ons beleid voor virtuele deelname voordat u deelneemt aan een bijeenkomst of webinar van ECD Global Alliance. \nOPMERKING: Controleer je tijdzone hier: Tijdzoneconverter. \nEr zal geen medische professional zijn die helpt bij deze gesprekken. Elke patiënt is uniek en medisch advies kan hier niet worden gegeven; we moedigen aan om alle ideeën met artsen te delen. Lees ons Beleid voor virtuele deelname.
URL:https://www.erdheim-chester.org/it/event/chat-met-de-italiaanse-gemeenschap-3/
CATEGORIES:Italiaanse Gemeenschap 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:20260414T110000
DTEND;TZID=America/Chicago:20260414T120000
DTSTAMP:20260201T213033Z
CREATED:20260201T213033Z
LAST-MODIFIED:20260201T213033Z
UID:10001273-1776164400-1776168000@www.erdheim-chester.org
SUMMARY:Chat de la Comunidad Italiana
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/it/event/chat-de-la-comunidad-italiana-3/
CATEGORIES:Chats de la Comunidad Italiana
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:20260414T110000
DTEND;TZID=America/Chicago:20260414T120000
DTSTAMP:20260201T213033Z
CREATED:20260201T213033Z
LAST-MODIFIED:20260201T213033Z
UID:10001274-1776164400-1776168000@www.erdheim-chester.org
SUMMARY:Bate-papo da comunidade italiana
DESCRIPTION:Registre-se hoje \nOs bate-papos são abertos para qualquer tópico de discussão\, dentro do razoável. Os tópicos frequentemente discutidos incluem ECD questões de diagnóstico\, tratamentos\, testes\, médicos experientes\, sintomas\, efeitos colaterais do tratamento e\, às vezes\, apenas discussões amigáveis sobre coisas agradáveis que estão acontecendo na vida dos participantes. A maioria dos participantes das sessões encontrou conexões e continua a se corresponder fora das sessões de bate-papo. As reuniões também oferecem uma estrutura de apoio para aqueles que estão interessados em aprender o máximo possível sobre ECD e oferecer apoio mútuo.    \nLeia nossa Política de Participação Virtual antes de participar de uma reunião ou webinar da ECD Global Alliance. \nOBSERVAÇÃO: Verifique seu fuso horário aqui: Conversor de fuso horário. \nNão haverá um profissional médico auxiliando nessas chamadas. Cada paciente é único e não é possível oferecer aconselhamento médico aqui; incentivamos que todas as ideias sejam compartilhadas com os médicos. Leia nossa Política de participação virtual.
URL:https://www.erdheim-chester.org/it/event/bate-papo-da-comunidade-italiana-3/
CATEGORIES:Chats da comunidade italiana
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:20260414T110000
DTEND;TZID=America/Chicago:20260414T120000
DTSTAMP:20260201T213033Z
CREATED:20260201T213033Z
LAST-MODIFIED:20260201T213033Z
UID:10001275-1776164400-1776168000@www.erdheim-chester.org
SUMMARY:Chat i det italienske samfunnet
DESCRIPTION:Registrer deg i dag \nChattene er åpne for alle diskusjonstemaer innenfor rimelighetens grenser. ECD Ofte diskuteres temaer som diagnoser\, behandlinger\, tester\, kunnskapsrike leger\, symptomer\, bivirkninger av behandlingen og noen ganger bare vennskapelige diskusjoner om hyggelige ting som skjer i deltakernes liv. De fleste som deltar på møtene\, har funnet nye kontakter og fortsetter å korrespondere utenom chatteøktene. Møtene gir også en støttestruktur for dem som er interessert i å lære så mye som mulig om ECD og gi hverandre gjensidig støtte.    \nVennligst les våre retningslinjer for virtuell deltakelse før du deltar på et møte eller webinar på ECD Global Alliance. \nMERK: Sjekk tidssonen din her: Tidssoneomregner. \nDet vil ikke være noen medisinsk fagperson som bistår i disse samtalene. Hver pasient er unik\, og vi kan ikke gi medisinske råd her; vi oppfordrer til å dele alle ideer med leger. Vennligst les våre retningslinjer for virtuell deltakelse.
URL:https://www.erdheim-chester.org/it/event/chat-i-det-italienske-samfunnet-3/
CATEGORIES:Chatter i det italienske samfunnet
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:20260414T110000
DTEND;TZID=America/Chicago:20260414T120000
DTSTAMP:20260201T213033Z
CREATED:20260201T213033Z
LAST-MODIFIED:20260201T213033Z
UID:10001268-1776164400-1776168000@www.erdheim-chester.org
SUMMARY:צ'אט קהילתי איטלקי
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/it/event/%d7%a6%d7%90%d7%98-%d7%a7%d7%94%d7%99%d7%9c%d7%aa%d7%99-%d7%90%d7%99%d7%98%d7%9c%d7%a7%d7%99-3/
CATEGORIES:צ'אטים בקהילה האיטלקית
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260414T110000
DTEND;TZID=America/Chicago:20260414T120000
DTSTAMP:20260201T213033Z
CREATED:20260201T213033Z
LAST-MODIFIED:20260201T213033Z
UID:10001276-1776164400-1776168000@www.erdheim-chester.org
SUMMARY:Chat della comunità italiana
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/it/event/chat-della-comunita-italiana-3/
CATEGORIES:Chat della comunità italiana
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:20260406T175156Z
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/it/event/caregiver-community-chat-11/
CATEGORIES:Caregiver Community Chats
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260416T110000
DTEND;TZID=America/Chicago:20260416T120000
DTSTAMP:20260406T175431Z
CREATED:20260406T175431Z
LAST-MODIFIED:20260406T175431Z
UID:10001394-1776337200-1776340800@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/it/event/canadian-community-chat-10/
CATEGORIES:Canadian Community Chats
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260421T110000
DTEND;TZID=America/Chicago:20260421T120000
DTSTAMP:20260406T175329Z
CREATED:20260406T175329Z
LAST-MODIFIED:20260406T175329Z
UID:10001382-1776769200-1776772800@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/it/event/spanish-community-chat-8/
CATEGORIES:Spanish Community Chats
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260422T220000
DTEND;TZID=America/Chicago:20260422T230000
DTSTAMP:20260406T175610Z
CREATED:20260406T175610Z
LAST-MODIFIED:20260406T175610Z
UID:10001416-1776895200-1776898800@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/it/event/australian-new-zealand-community-chat-11/
CATEGORIES:Australian and New Zealand Community Chats
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260429
DTEND;VALUE=DATE:20260501
DTSTAMP:20260410T173700Z
CREATED:20251030T142537Z
LAST-MODIFIED:20260410T173700Z
UID:10000957-1777420800-1777593599@www.erdheim-chester.org
SUMMARY:11ª Reunión Anual de Pacientes y Familiares de ECD - Birmingham 2026
DESCRIPTION:La Alianza Mundial contra la Enfermedad de Erdheim-Chester anuncia la Reunión de Pacientes y Familiares 2026. \nBirmingham\, AL – La Alianza Mundial contra la Enfermedad de Erdheim-Chester (ECDGA) y la Facultad de Medicina de la UAB invitan a pacientes\, familiares\, profesionales sanitarios e investigadores a que reserven la fecha. \n\nReunión de Pacientes y Familiares (PFG): 29-30 de abril de 2026\n\nMiércoles\, 29 de abril de 2026\nRecepción y bienvenida: 15:00-17:00\nUbicación: Hilton at UAB Downtown \nJueves\, 30 de abril de 2026\nEncuentro de pacientes y familias: 8:00-16:30\nUbicación: Marnix E. Heersink Conference Center at the University of Alabama at Birmingham \nCena de celebración: 18:00-20:00\nUbicación: Hilton at UAB Downtown \nEste acto reunirá a la comunidad mundial de la enfermedad de Erdheim-Chester con destacados expertos médicos para compartir las últimas investigaciones\, perspectivas clínicas y recursos comunitarios. Los asistentes pueden esperar sesiones educativas\, oportunidades de conectar con compañeros y actualizaciones sobre tratamientos emergentes y atención al paciente. \nEn los próximos meses se darán a conocer más detalles sobre el hotel y los aspectos más destacados del programa. \nAgenda\n\n\n\n\n	TimeAllocated minutes (510 min total)Presentation Subject Possibilities (Actual Titles to be Provided by Presenters)PresenterSession Description\n\n\n\n\n	8:00 AM30Registration & Light Breakfast\n\n\n	8:30 AM15Welcome to Birmingham & PFG MeetingGaurav Goyal\, MDWelcome to the 11th Annual Erdheim-Chester Disease International Conference!  Introductions to Birmingham\, UAB and the ECD Global Alliance.\n\n\n	8:45 AM15Manifestations of histiocytosis in adultsMatthew Collin\, MD\, PhDLearn about the difference types of adult histiocytic disorders. How are they different? How are they the same?  What have we learned recently that makes us believe they are more alike than they once were.\n\n\n	9:00 AM15Histiocytosis at the Cellular LevelAstrid van Halteren\, PhDThis presentation will zoom into the different cell types which can be found in the bone marrow\, blood and tissues of patients diagnosed with histiocytosis\n\n\n	9:15 AM15ECD/Histio Treatment OptionsSam Reynolds\, MDECD/Histio Treatment Options (Current & on the horizon)\n\n\n	9:30 AM15Tagreted Therapy: The Good\, the Bad\, and the UnaffordableDaniel Sokolowski\, PharmDOverview of targeted treatments for histiocytosis and management of their adverse effects.\n\n\n	9:45 AM20BreakN/A\n\n\n	10:05 AM15Advancing treatment for histiocytic neurodegeneration through patient specific modelingNicole Coufal\, MD\, PhDThe importance of patient samples to the science\, and the importance of pilot funding and where we hope to take it in the future.\n\n\n	10:20 AM15What should I know about ECD Treatment and My Heart?  Potential cardiac side effects of ECD treatment.Carrie Lenneman\, MD\, MSCIDiscuss common medication used in treatment of ECD . Review  potential cardiac side effects and management strategies of ECD treatment.\n\n\n	10:35 AM15ECD on the BrainEli Diamond\, MDDiscussion of ECD effects on the brain.\n\n\n	10:50 AM15Endocrine Manifestations of Erdheim-Chester DiseaseAlexandra Dodd\, MDUnderstand endocrine manifestations of ECD including effects on the pituitary gland. Understand the treatments for endocrine disorders related to ECD.\n\n\n	11:05 AM40Expert Q&AJulien Haroche\, MD\, PhD\nEli Diamond\, MD\nRonald Go\, MD\nGaurav Goyal\, MD (Moderator)Ask your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research.\n\n\n	11:45 AM15PicturesN/A\n\n\n	12:00 – 1:00pm60LunchN/A\n\n\n	1:00 PM20Research Opportunities (Panel Discussion - 5 min each)Eli Diamond\, MD (Registry)\nGaurav Goyal\, MD (Survivorship)\nJithma Abeykoon\, MD (CSF1R\, ERK)\nMatthew Collins\, MD\, PhDHear the answers from ECD Medical experts about the open research opportunities.  Hear up-to-date answers from those who are doing ECD research.\n\n\n	1:20 PM20Expert Question & Answer PanelGaurav Goyal\, MD\nEli Diamond\, MD\nJithme Abeykoon\, MD\nMatthew Collins\, MD\, PhDAsk your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research.  Don’t be shy\, ask your questions about ECD in general! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n	1:40 PM60Breakout SessionsKevin O'Brien\, RN\, MS-CRNP (patients) \n\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM (Caregivers)Breakout Session:\n\n- Patients: Personal Challenges in Living with Erdheim-Chester Disease\n\n- Cargivers & Family:  Addressing YOUR Emotional Needs\n\n\n	2:40 PM20BreakN/A\n\n\n	3:00 PM15General medical management for ECDKevin O'Brien\, RN\, MS-CRNPHighlighting the importance of managing ongoing general medical problems.  For example\, hypertension\, diabetes\, weight\, cholesterol levels\, etc.  These uncontrolled medical problems can compound overall disease burden.\n\n\n	3:15 PM15Emotional and Cognitive Changes in ECDSylvia Huang\, PhD\, MA\, MEd\, FAAHPMLiving with Erdheim-Chester Disease can bring emotional\, cognitive\, and fatigue-related changes that are real and often invisible. This session offers understanding\, reassurance\, and practical guidance to help patients and families make sense of these experiences. Participants will learn about supportive strategies and resources that promote resilience\, wellbeing\, and hope.\n\n\n	3:30 PM15Fatigue and Pain in Erdheim-Chester Disease: Root Causes and Practical Strategies for Energy\, Relief\, and ResilienceRichard Taylor\, PhD\, DNP\, CRNP\, APN-BCThis session is designed to empower patients and caregivers by unpacking the root causes of fatigue and pain in Erdheim-Chester Disease (ECD).\n\nThe goal is to offer meaningful\, evidence-informed tools to reduce suffering\, build resilience\, and improve energy\, mobility\, and quality of life.\n\n\n	3:45 PM15Movement is MedicineElizabeth Bohorfoush\, DPTPatients and caregivers receive guidance through gentle\, low-level exercises to help reduce pain\, build strength\, improve posture\, and encourage activity.\n\n\n	4:00 PM20Expert Question & Answer PanelKevin O'Brien\, RN\, MS-CRNP\nSylvia Huang\, PhD\, MA\, MEd\, FAAHPM\nRichard Taylor\, PhD\, DNP\, CRNP\, APN-BC\nElizabeth Bohorfoush\, DPTAsk your questions and hear the answers from the experts. Don’t be shy\, ask your questions! [Please note\, the panel is unable to provide any personal medical advise during this session.]\n\n\n	4:20 PM10ECDGA CloseJerome Henson\, ED (ECDGA)Learn more about the ECD Global Alliance.  Hear why the organization was created and what has been accomplished as a result.  Learn how the organization is able to do its work and how you can become more involved in improving the lives of all who have been impacted by Erdheim-Chester Disease.\n\n\n	510\n\n\n\n\nDescargar agenda \nRegístrate en \nNOTA: ¡Inscríbete antes del 1 de febrero para aprovechar el coste de inscripción anticipada! ¡Ahorra 100 USD y regístrate por sólo 100 USD!  \nPremio Mark Heaney a la Sensibilización y Premio al Campeón de la Comunidad\n1 de febrero de 2026 – Último día para presentar tu candidatura al Premio Mark Heaney a la Concienciación y al Premio al Campeón de la Comunidad. \n\nPor favor\, envía tus candidaturas aquí.\n\nPremio Mark Heaney a la Concienciación. Nomina a un profesional médico que trabaje para mejorar la vida de los pacientes de ECD\, sensibilizando a la profesión médica sobre la enfermedad. \nPremio al Campeón de la Comunidad. Nomina a cualquier persona (paciente\, cuidador\, profesional médico\, amigo\, etc.) que haya dedicado su tiempo voluntariamente a ayudar a mejorar la vida de todas las personas afectadas por el ECD. \n\n\n\nContacto:\nErdheim-Chester Disease Global Alliance\nCorreo electrónico: support@erdheim-chester.org \nPóster para pacientes – Presentaciones\nEl 1 de febrero de 2026 es el último día para completar un póster de paciente para su exposición en el Encuentro de pacientes y familias. ¡Envíe aquí la información de su póster! \nBecas de viaje\nAyuda para viajes – Fondo para viajes en memoria de Glenn Padnick Se aceptan solicitudes para la Conferencia de la ECDGA de 2026. \nGlenn Padnick vivió una vida plena e impactante mientras navegaba por la enfermedad de Erdheim-Chester (ECD) durante décadas. De 2011 a 2022\, trabajó con dedicación inquebrantable en la Junta Directiva de la Alianza Global ECD\, asegurándose siempre de que las voces y necesidades de los pacientes ocuparan un lugar central en cada decisión.  \nEn honor al legado de servicio y compasión de Glenn\, su familia creó generosamente el Fondo de Viajes en Memoria de Glenn Padnick. Este fondo proporciona ayuda económica para que los pacientes\, cuidadores y profesionales de la medicina puedan asistir a la conferencia anual de la ECD a quienes\, de otro modo\, no podrían participar debido a limitaciones económicas.  \nYa están abiertas las solicitudes de ayuda de viaje para la Conferencia ECD 2026. La financiación es limitada\, y se dará prioridad a las personas que no hayan asistido nunca al evento. Nuestro objetivo es poner esta oportunidad a disposición del mayor número posible de miembros de la comunidad con los recursos disponibles.   \nPlazo de solicitud: 1 de febrero de 2026 Notificaciones de adjudicación: A más tardar el 1 de marzo de 2026 \nSolicítalo aquí: Solicitud del Fondo para Viajes en Memoria de Glenn Padnick. \nInformación sobre hoteles y viajes\nHotel de Congresos\nHilton Birmingham at UAB\n808 20th Street South\nBirmingham\, AL 35205\nTeléfono: +1 (659) 251-1934 \nSe ha reservado un bloque de habitaciones en el Hilton Birmingham de la UAB para los asistentes a la conferencia.\nLas habitaciones deben reservarse antes del 6 de abril de 2026 para recibir la tarifa de grupo. \nReservar una habitación \nSi tiene algún problema al reservar su habitación\, póngase en contacto con Simon Hill en el Hilton Birmingham Downtown. Su número es el 205-910-1970 y su correo electrónico es simon.hill@hiltoncom.  \nTransporte al aeropuerto\nAeropuerto Internacional de Birmingham-Shuttlesworth (BHM)\nHay un servicio gratuito de lanzadera desde el aeropuerto de Birmingham hasta el hotel\, proporcionado directamente por el Hilton Downtown de la UAB. \nPara utilizar la lanzadera:   \n\nRecoge tu equipaje.\nLlama al hotel al 205-933-9000 para solicitar el servicio de transporte.\nDirígete a la puerta nº 4L y espera el autobús marcado “Hilton”.\n\nViajar vía Atlanta\nEl Aeropuerto Internacional Hartsfield-Jackson de Atlanta (ATL) está a unas 3 horas de Birmingham y ofrece vuelos internacionales directos a la mayoría de los países. Hay servicios de enlace entre el aeropuerto de Atlanta y Birmingham para los viajeros que lleguen a través de ATL.  \nEnlace al servicio de transporte \nRegístrate en \nNuestros patrocinadores\nEsta reunión es posible gracias a nuestro patrocinador\, el padre Charles Balnaves de Melbourne\, Australia\, quien apoya este evento en memoria de su difunta esposa\, Tanya. Agradecemos el continuo y generoso patrocinio del padre Charles. También agradecemos el apoyo de ARUP Laboratories.\n 
URL:https://www.erdheim-chester.org/it/event/11a-reunion-anual-de-pacientes-y-familiares-de-ecd-birmingham-2026/
LOCATION:Hilton Birmingham at UAB\, 808 20th St S\, Birmingham\, AL 35205\, Birmingham\, AL\, 35205\, United States
CATEGORIES:Destacado,ECD Reunión de pacientes y familiares
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END:VCALENDAR