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BEGIN:VEVENT
DTSTART;TZID=Europe/Berlin:20240319T190000
DTEND;TZID=Europe/Berlin:20240319T200000
DTSTAMP:20260508T012041
CREATED:20240319T183322Z
LAST-MODIFIED:20240319T195906Z
UID:16455-1710874800-1710878400@www.sumairafoundation.org
SUMMARY:Was Betroffene über NMOSD und MOGAD wissen sollten
DESCRIPTION:Sie sind zum kommenden Webinar von TSF Deutschland eingeladen: Was Betroffene über NMOSD und MOGAD wissen sollten. \nBesuchen Sie uns am Dienstag\, den 19. März um 19:00 Uhr MEZ zu einer aufschlussreichen Diskussion mit Dr. Joachim Havla (Ludwig-Maximilians-Universität München) über alles\, was Sie über NMOSD und MOGAD wissen müssen! \nTeilnehmer des Live-Webinars haben die Möglichkeit\, Dr. Havla Fragen zu stellen. Dieses Webinar wird aufgezeichnet und kann auf dem YouTube-Kanal und der globalen Website von TSF wiedergegeben werden. \nDieses Programm wird mit Unterstützung von Amgen ermöglicht. Eine Anmeldung ist erforderlich.
URL:https://www.sumairafoundation.org/event/was-betroffene-uber-nmosd-und-mogad-wissen-sollten/
LOCATION:Virtual: Germany\, Germany
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/03/Joachim-Havla.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Rome:20240320T180000
DTEND;TZID=Europe/Rome:20240320T190000
DTSTAMP:20260508T012041
CREATED:20240229T153236Z
LAST-MODIFIED:20240319T184618Z
UID:16327-1710957600-1710961200@www.sumairafoundation.org
SUMMARY:La storia e l'evoluzione di NMOSD
DESCRIPTION:Per celebrare il Mese della Consapevolezza NMO 2024\, TSF Italia ti invita a partecipare a un webinar molto speciale con il Professor Luca Massacesi e la Dott.ssa Sara Mariotto mercoledì 20 marzo alle 18:00 CET. \nIn questo webinar in formato intervista\, verrà fatto un excursus storico sulla neuromielite ottica\, toccando anche diversi aspetti tra cui la complessa diagnosi differenziale e le conseguenti difficoltà nelle scelte terapeutiche prima della scoperta degli anticorpi anti-AQP4\, l’impatto della scoperta degli anticorpi stessi e l’apporto dei diversi criteri diagnostici. Infine\, verranno discussi aspetti più recenti come la caratterizzazione patogenetica dell’NMOSD facendo accenno anche alla diagnosi differenziale con malattie di più recente identificazione e le ultime strategie terapeutiche. \nI partecipanti all’evento dal vivo avranno l’opportunità di porre domande agli esperti. Questo webinar sarà registrato e sarà disponibile per la riproduzione sul canale YouTube e sulla libreria multimediale di TSF. \nQuesto programma è reso possibile grazie al supporto di Amgen.
URL:https://www.sumairafoundation.org/event/la-storia-e-levoluzione-di-nmosd/
LOCATION:Virtual: Italy\, Italy
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/02/Luca-Massacesi-Sara-Mariotto-1024x576-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Sao_Paulo:20240321T190000
DTEND;TZID=America/Sao_Paulo:20240321T200000
DTSTAMP:20260508T012041
CREATED:20240229T153945Z
LAST-MODIFIED:20240321T170842Z
UID:16330-1711047600-1711051200@www.sumairafoundation.org
SUMMARY:Compreendendo as semelhanças e diferenças entre NMOSD\, MOGAD e MS
DESCRIPTION:Para celebrar o Mês de Conscientização sobre NMO 2024\, convidamos pacientes\, cuidadores\, médicos e pesquisadores de língua portuguesa a participarem do primeiro webinar português da TSF: Compreendendo as semelhanças e diferenças entre DENMO\, MOGAD e EM. \nEste webinar ao vivo contará com a participação do Professor Jefferson Becker\, da Pontifícia Universidade Católica do Rio Grande do Sul\, que descreverá as semelhanças e diferenças entre NMOSD\, MOGAD e esclerose múltipla. \nOs participantes do webinar ao vivo terão a oportunidade de perguntar ao Prof. Becker questões em tempo real. A sessão será gravada e disponibilizada no YouTube. \nEste programa é possível com o apoio da Amgen em colaboração com a The Sumaira Foundation\, BCTRIMS e NMO Brasil.
URL:https://www.sumairafoundation.org/event/compreendendo-as-semelhancas-e-diferencas-entre-nmosd-mogad-e-ms/
LOCATION:Virtual: Brazil\, Brazil
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/02/Jefferson-Becker-1024x576-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20240321T190000
DTEND;TZID=Europe/Paris:20240321T200000
DTSTAMP:20260508T012041
CREATED:20240314T143933Z
LAST-MODIFIED:20240321T171817Z
UID:16441-1711047600-1711051200@www.sumairafoundation.org
SUMMARY:La rééducation et la récupération dans les maladies neurologiques (SEP\, NMOSD\, MOGAD)
DESCRIPTION:A l’occasion du mois de sensibilisation à la NMOSD\, le docteur Cécile Donzé nous fait le plaisir de venir aborder avec TSF France la rééducation et la réadaptation dans les maladies neurologiques (NMOSD\, Mogad et Sclérose en plaques (SEP)). Toutes ces maladies se caractérisent par l’apparition de handicaps plus ou moins visibles mais qui ne sont pas définitifs pour la plupart si on peut bénéficier d’une bonne prise en charge. \nVous pourrez profiter d’un échange avec cette spécialiste reconnue de Médecine Physique et de Réadaptation\, cheffe de service au centre spécialisé de Saint-Philibert-de-Lomme. Nous aborderons les aspects pratiques et répondrons à vos questions en direct. \nCe programme est rendu possible grâce au soutien d’Alexion Pharmaceuticals.
URL:https://www.sumairafoundation.org/event/la-reeducation-et-la-recuperation-dans-les-maladies-neurologiques-sep-nmosd-mogad/
LOCATION:Virtual: France\, France
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/03/Cecile-Donze-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Tokyo:20240407T100000
DTEND;TZID=Asia/Tokyo:20240407T110000
DTSTAMP:20260508T012041
CREATED:20240326T204953Z
LAST-MODIFIED:20240401T135054Z
UID:16508-1712484000-1712487600@www.sumairafoundation.org
SUMMARY:NMOSD\, MOGAD\, MS の類似点と相違点を理解する
DESCRIPTION:視神経脊髄炎（NMOSD）、MOG抗体関連疾患（MOGAD）、多発性硬化症（MS）に関して４月７日（日）日本時間10:00からウェビナーを開催します。３疾患はどのような点が異なるかというお話について専門家が分かりやすく解説します。質問の時間もありますのでぜひご参加ください。 \n演題：「NMOSD、MOGAD、MSの類似点と相違点を理解する」 講師：藤原一男先生（福島県立医科大学） \n藤原一男先生 脳神経内科医。福島県立医科大学医学部 多発性硬化症治療学講座 教授。 脳神経疾患研究所附属南東北病院 多発性硬化症・視神経脊髄炎センター センター長。 専門分野は多発性硬化症（MS）、視神経脊髄炎（NMOSD）、MOG抗体関連疾患（MOGAD）などの免疫性神経疾患。 \n※内容は録画し、後日、スマイラ財団のYouTubeチャンネルから再配信します。 ※このセミナーはアムジェン株式会社の支援のもと、MSキャビンと日本視神経脊髄炎患者会の協力によって開催します。
URL:https://www.sumairafoundation.org/event/nmosd-mogad-ms-%e3%81%ae%e9%a1%9e%e4%bc%bc%e7%82%b9%e3%81%a8%e7%9b%b8%e9%81%95%e7%82%b9%e3%82%92%e7%90%86%e8%a7%a3%e3%81%99%e3%82%8b/
LOCATION:Virtual: Japan\, Japan
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/03/9817a3eb-440f-4130-bf10-578446557799.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Bogota:20240425T193000
DTEND;TZID=America/Bogota:20240425T203000
DTSTAMP:20260508T012041
CREATED:20240423T154147Z
LAST-MODIFIED:20240425T144500Z
UID:16771-1714073400-1714077000@www.sumairafoundation.org
SUMMARY:Diferencias entre Esclerosis múltiple\, NMOSD y MOG-AD
DESCRIPTION:El Dr Carlos Navas discutirá desde la perspectiva del paciente\, las diferencias entre Esclerosis múltiple\, NMOSD y MOGAD.\n\nEl Dr Navas es un médico colombiano dedicado al estudio y tratamiento de pacientes con enfermedades desmielinizantes. Acompáñanos en un nuevo From the Experts en español\, el jueves 25 de abril a las 7:30 pm COT para estar en vivo con el Dr. Navas.\n\nLos asistentes tendrán la oportunidad de hacer preguntas al Dr. Navas en tiempo real. Este seminario web se grabará y estará disponible para reproducirse en el canal de YouTube de TSF.\n\nEste programa es posible gracias al apoyo de Amgen.
URL:https://www.sumairafoundation.org/event/diferencias-entre-esclerosis-multiple-nmosd-y-mog-ad/
LOCATION:Virtual: Colombia\, Colombia
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/04/Carlos-Navas-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20240527T140000
DTEND;TZID=Europe/Paris:20240527T150000
DTSTAMP:20260508T012041
CREATED:20240524T143519Z
LAST-MODIFIED:20240524T143519Z
UID:16941-1716818400-1716822000@www.sumairafoundation.org
SUMMARY:Démarches administratives et handicap
DESCRIPTION:Nous vous invitons à rejoindre notre prochain webinaire le lundi 27 mai à 14h00 CET avec Marie Delenne\, Patiente Experte Sclérose en Plaques et ancienne Inspectrice du Travail. \nDémarches administratives quand on est en situation de handicap\, quelle galère ! Travail\, Sécu\, MDPH\, RQTH\, Retraite ! \nVenez en parler avec nous et recevoir les conseils de notre Experte qui aide depuis des années des Patients comme vous. \nCe programme est rendu possible grâce au soutien d’Alexion.
URL:https://www.sumairafoundation.org/event/demarches-administratives-et-handicap/
LOCATION:Virtual: France\, France
CATEGORIES:From The Experts,TSF Webinar
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/05/Marie-Delenne.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Bogota:20240704T190000
DTEND;TZID=America/Bogota:20240704T200000
DTSTAMP:20260508T012041
CREATED:20240618T171057Z
LAST-MODIFIED:20240704T230036Z
UID:17306-1720119600-1720123200@www.sumairafoundation.org
SUMMARY:Mi enfermedad ¿Tierra o Sol?
DESCRIPTION:Convivir con un diagnóstico médico puede representar desafíos en diferentes áreas\, pero ¿Eso significa necesariamente que se convierte en el sol alrededor del que todos los planos de mi vida giran? ¿Qué hay de si también planteamos la posibilidad de que podría ser como el planeta Tierra?\, que si bien tiene al Sol como referencia para moverse\, tiene vida propia más allá de él. \nEn julio\, queremos hablar de la salud mental. La psicóloga Silvia Guzmán nos lleva a un espacio reflexivo para cavilar sobre estas preguntas y conocer cómo los procesos psicológicos como el pensamiento\, la motivación y la emoción\, influyen en la convivencia con la enfermedad. Al final\, podrás responderte: “mi enfermedad ¿Tierra o Sol?. Acompáñanos el próximo 4 de julio a las 7 pm COT.
URL:https://www.sumairafoundation.org/event/mi-enfermedad-tierra-o-sol/
LOCATION:Virtual: Colombia\, Colombia
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/06/Silvia-Tatiana-Guzman.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Bogota:20240821T180000
DTEND;TZID=America/Bogota:20240821T190000
DTSTAMP:20260508T012041
CREATED:20240726T190133Z
LAST-MODIFIED:20240730T130810Z
UID:17558-1724263200-1724266800@www.sumairafoundation.org
SUMMARY:Tratamientos para el NMOSD
DESCRIPTION:El jueves 21 de agosto a las 6pm hora Colombia\, el Dr Carlos Navas de Colombia y el Dr Edgar Carnero de Argentina nos contarán los tratamientos para NMOSD. ¡¡Acompáñanos!!
URL:https://www.sumairafoundation.org/event/tratamientos-para-el-nmosd/
LOCATION:Virtual: Colombia\, Colombia
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/07/NavasContentti.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240823T140000
DTEND;TZID=America/New_York:20240823T150000
DTSTAMP:20260508T012041
CREATED:20240807T192135Z
LAST-MODIFIED:20240807T192135Z
UID:17679-1724421600-1724425200@www.sumairafoundation.org
SUMMARY:Verständnis von MOGAD und der Bedeutung der Patientenbeteiligung an klinischen Studien
DESCRIPTION:TSF Deutschland lädt deutschsprachige MOGAD-Patienten\, Pflegekräfte und Kliniker ein\, an unserem kommenden Live-Webinar “Verständnis von MOGAD und der Bedeutung der Patientenbeteiligung an klinischen Studien – mit Professor Friedemann Paul\, Neuroimmunologe an der Charité – Universitätsmedizin Berlin” teilzunehmen. \nLive-Teilnehmer haben die Möglichkeit\, Prof. Paul in Echtzeit Fragen zu stellen. \nDiese Sitzung wird aufgezeichnet und kann danach auf dem YouTube-Kanal von TSF wiedergegeben werden. \nDieses Programm wurde mit Unterstützung von UCB ermöglicht.
URL:https://www.sumairafoundation.org/event/verstandnis-von-mogad-und-der-bedeutung-der-patientenbeteiligung-an-klinischen-studien/
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/08/GERMAN.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Kolkata:20241123T090000
DTEND;TZID=Asia/Kolkata:20241123T100000
DTSTAMP:20260508T012041
CREATED:20241112T205613Z
LAST-MODIFIED:20241120T201500Z
UID:18327-1732352400-1732356000@www.sumairafoundation.org
SUMMARY:डिमायेलिनेटिंग बीमारियों पर जागरूकता और मार्गदर्शन
DESCRIPTION:कृपया 23 नवम्बर को सुबह 9 बजे IST पर हमारे विशेष वेबिनार में सम्मिलित हों\, जिसमें डॉ. पार्थवी रावत द्वारा डिमायेलिनेटिंग बीमारियों से प्रभावित रोगियों और उनके परिवारों को शिक्षित और सहायता प्रदान करने हेतु बहुमूल्य जानकारी और विशेषज्ञ मार्गदर्शन दिया जाएगा। लाइव वेबिनार में शामिल होने वाले प्रतिभागियों को डॉ. रावत से सीधे प्रश्न पूछने का अवसर मिलेगा। यह सत्र रिकॉर्ड किया जाएगा और TSF के यूट्यूब चैनल पर पुनः देखने के लिए उपलब्ध रहेगा। यह कार्यक्रम एमजेन के समर्थन से संभव हुआ है।
URL:https://www.sumairafoundation.org/event/%e0%a4%a1%e0%a4%bf%e0%a4%ae%e0%a4%be%e0%a4%af%e0%a5%87%e0%a4%b2%e0%a4%bf%e0%a4%a8%e0%a5%87%e0%a4%9f%e0%a4%bf%e0%a4%82%e0%a4%97-%e0%a4%ac%e0%a5%80%e0%a4%ae%e0%a4%be%e0%a4%b0%e0%a4%bf%e0%a4%af%e0%a5%8b/
LOCATION:Virtual: Global
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/11/Parthvi-Ravat.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20241204T200000
DTEND;TZID=Europe/Paris:20241204T210000
DTSTAMP:20260508T012041
CREATED:20241120T195511Z
LAST-MODIFIED:20241120T195716Z
UID:18421-1733342400-1733346000@www.sumairafoundation.org
SUMMARY:Vécu\, besoins et attentes des patient(e)s français
DESCRIPTION:Les résultats sont là ! Vous avez peut-être participé à l’enquête réalisée par Alexion en partenariat avec The Sumaira Foundation France intitulée “Vécu\, besoins et attentes des patient(e)s atteint(e)s de NMOSD”. \nEn compagnie du Docteur Livia Lanotte\, neurologue et présidente du réseau Alsacep\, et Bérengère\, ambassadrice TSF\, nous reviendrons sur les résultats et les enseignements de cette enquête. TSF France a travaillé sur le questionnaire afin que la parole recueillie puisse servir le plus grand nombre. Nous pourrons nous appuyer sur les résultats de cette enquête pour porter un plaidoyer fort auprès des pouvoirs publics afin d’améliorer le quotidien des personnes touchées par une NMOSD ou une MOGAD. \nCe programme est rendu possible grâce au soutien de Alexion.
URL:https://www.sumairafoundation.org/event/vecu-besoins-et-attentes-des-patientes-francais/
LOCATION:Virtual: Global
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/11/Livia-Lanotte.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Seoul:20250121T090000
DTEND;TZID=Asia/Seoul:20250121T100000
DTSTAMP:20260508T012041
CREATED:20250109T175044Z
LAST-MODIFIED:20250110T191438Z
UID:18664-1737450000-1737453600@www.sumairafoundation.org
SUMMARY:다발성경화증(MS)\, 시신경척수염(NMOSD)\, 모그항체질환(MOGAD) 간의 유사점과 차이점을 이해합니다
DESCRIPTION:TSF 최초의 국내 환자교육 웨비나에 여러분을 초대합니다. \n1월 21일 화요일 오전 9시에 NMOSD와 MOGAD 전문가 김호진 박사가 출연하여 MOGAD\, MS 및 NMOSD 간의 유사점과 차이점을 논의하는 독점 프로그램에 참여하세요. \n참석자들은 김 박사에게 질문할 기회를 갖게 됩니다. 이 웹 세미나는 녹화되어 TSF의 YouTube 채널에서 재생할 수 있습니다. \n등록하려면 https://us02web.zoom.us/webinar/register/WN_7G2vm1JvTJeRgyB0cLrGMQ를 방문하세요.
URL:https://www.sumairafoundation.org/event/%eb%8b%a4%eb%b0%9c%ec%84%b1%ea%b2%bd%ed%99%94%ec%a6%9dms-%ec%8b%9c%ec%8b%a0%ea%b2%bd%ec%b2%99%ec%88%98%ec%97%bcnmosd-%eb%aa%a8%ea%b7%b8%ed%95%ad%ec%b2%b4%ec%a7%88%ed%99%98mogad-%ea%b0%84/
LOCATION:Virtual: Korea
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/01/Ho-Jin-Kim-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250129T200000
DTEND;TZID=Europe/Paris:20250129T210000
DTSTAMP:20260508T012041
CREATED:20250127T162011Z
LAST-MODIFIED:20250127T162423Z
UID:18828-1738180800-1738184400@www.sumairafoundation.org
SUMMARY:LES TROUBLES DU SOMMEIL : THÉORIE ET PRATIQUE POUR MIEUX DORMIR
DESCRIPTION:Les troubles du sommeil sont courants dans les maladies neurologiques. La NMO et la MOGAD ne font pas exception. Que ce soit les troubles de l’endormissement\, les réveils\, le sommeil peu réparateur\, les troubles sont variés et difficiles de s’en débarrasser. \nEn compagnie de Véronique Carrette\, sophrologue et hypnothérapeute\, Bérengère et Fatiha\, ambassadrices TSF\, nous les évoquerons mais surtout nous échangerons des trucs et astuces et des moyens d’améliorer la qualité de son sommeil. Retrouvez-nous en ligne ce mercredi 29 janvier à 20 heures. Vous pourrez poser toutes vos questions.
URL:https://www.sumairafoundation.org/event/les-troubles-du-sommeil-theorie-et-pratique-pour-mieux-dormir/
LOCATION:Virtual: Global
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/01/Veronique-Carrette.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250131T110000
DTEND;TZID=America/New_York:20250131T120000
DTSTAMP:20260508T012041
CREATED:20241211T165158Z
LAST-MODIFIED:20250127T161446Z
UID:18513-1738321200-1738324800@www.sumairafoundation.org
SUMMARY:Managing Incontinence with Neuroimmune Disorders
DESCRIPTION:Join us on December 20th for TSF’s final webinar of 2024: Managing Incontinence with Neuroimmune Disorders featuring Dr. Raveen Syan\, Urologist and Assistant Professor of Clinical Urology at The University of Miami. \nDr. Syan will discuss urinary\, bowel and sexual dysfunction in the setting of neuroimmune conditions. Attendees joining the live program will have the opportunity to ask Dr. Raveen questions in real time. This webinar will be recorded and available for replay on TSF’s YouTube channel. \nThis program is made possible with support from Amgen.
URL:https://www.sumairafoundation.org/event/managing-incontinence-with-neuroimmune-disorders/
LOCATION:Virtual: Global
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/12/Raveen-Syan-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Bogota:20250203T180000
DTEND;TZID=America/Bogota:20250203T190000
DTSTAMP:20260508T012041
CREATED:20250116T190007Z
LAST-MODIFIED:20250116T190007Z
UID:18711-1738605600-1738609200@www.sumairafoundation.org
SUMMARY:Tratamientos para MOGAD
DESCRIPTION:Únase a nosotros el 3 de febrero para una presentación en vivo y una discusión sobre las opciones de tratamiento para pacientes de MOGAD en América Latina. \n  \nPara registrarse\, visite: https://us02web.zoom.us/webinar/register/WN_hLhettqCQQGgi1nt5Lf68A \n  \nLos asistentes tendrán la oportunidad de hacer preguntas a los expertos. Este seminario web se grabará y estará disponible para reproducirse en el canal de YouTube de TSF. \n  \nEste programa es posible gracias al apoyo de Amgen.
URL:https://www.sumairafoundation.org/event/tratamientos-para-mogad/
LOCATION:Virtual: Global
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/01/Contentti-and-Navas.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250306T140000
DTEND;TZID=America/New_York:20250306T153000
DTSTAMP:20260508T012041
CREATED:20250215T144137Z
LAST-MODIFIED:20250215T144137Z
UID:18866-1741269600-1741275000@www.sumairafoundation.org
SUMMARY:Navigating the Transition from Pediatric to Adult Neuroimmunology Care
DESCRIPTION:We’re calling pediatric patients and their parents/caregivers to join us on March 6th for a special webinar featuring experts from Children’s National Hospital and George Washington University. \nThis webinar will provide an overview of the transition from pediatric to adult medical care\, featuring insights from a pediatric neurologist\, social worker\, and a neuropsychologist. \nTopics will include maintaining continuity of care\, managing complex medical conditions\, self-advocacy in healthcare settings\, and addressing social and emotional considerations. The discussion aims to support patients\, families\, and caregivers in navigating this important transition effectively.
URL:https://www.sumairafoundation.org/event/navigating-the-transition-from-pediatric-to-adult-neuroimmunology-care/
LOCATION:Virtual: United States\, United States
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/02/Childrens-National.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Africa/Bangui:20250317T180000
DTEND;TZID=Africa/Bangui:20250317T193000
DTSTAMP:20260508T012041
CREATED:20250227T205412Z
LAST-MODIFIED:20250317T151413Z
UID:18883-1742234400-1742239800@www.sumairafoundation.org
SUMMARY:NMOSD in sub-Saharan Africa
DESCRIPTION:In honor of NMO Awareness Month 2025\, TSF is excited to present “NMOSD in Sub-Saharan Africa\,” a live event exploring the landscape of NMOSD and other rare neuroimmunological disorders. \nJoin us on Monday\, March 17th\, for an exclusive webinar featuring Dr. Mashina Chomba (Zambia)\, Dr. Fiifi Duodu (Ghana)\, Dr. Pearl Thomas (South Africa)\, and Dr. Cynthia Wendo (Kenya). The experts will provide insights and answer questions about the prevalence and incidence of NMOSD\, diagnostics\, available treatments\, immunizations\, clinical trials\, and more. We invite patients\, caregivers\, clinicians\, researchers\, and advocates from around the world to attend. \nLive participants will have the opportunity to ask questions directly to the experts. The webinar will be recorded and made available for replay on TSF’s YouTube channel. \nRegistration is required.
URL:https://www.sumairafoundation.org/event/nmosd-in-sub-saharan-africa/
LOCATION:Virtual: South Africa\, South Africa
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2025/02/NMOSD-in-Sub-Saharan-Africa-1280-x-720-px.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250324T200000
DTEND;TZID=Europe/Paris:20250324T210000
DTSTAMP:20260508T012041
CREATED:20250304T230139Z
LAST-MODIFIED:20250304T230200Z
UID:18958-1742846400-1742850000@www.sumairafoundation.org
SUMMARY:La gestion de la fatigue dans la NMOSD et la MOGAD
DESCRIPTION:La fatigue et la fatigabilité touchent toutes les personnes souffrant de NMOSD et de MOGAD. Cela reste la première cause de baisse de la qualité de vie mais est assez difficile à gérer. Imprévisible\, durable\, la fatigue n’est pas gérable avec une pilule miracle. Pour aborder ce sujet nous serons en compagnie du docteur Nathalie Moreau\, Cheffe de service de l’unité de Médecine Physique et de Réadaptation de l’Hôpital Léopold Bellan à Paris et de Véronique Carrette\, sophrologue et hypnothérapeute. Vous pourrez poser vos questions à nos intervenantes. Ce programme est rendu possible grâce au soutien d’Amgen.
URL:https://www.sumairafoundation.org/event/la-gestion-de-la-fatigue-dans-la-nmosd-et-la-mogad/
LOCATION:Virtual: France\, France
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2025/03/Veronique-Carrette-et-Nathalie-Moreau.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250325T190000
DTEND;TZID=America/New_York:20250325T200000
DTSTAMP:20260508T012041
CREATED:20250311T170125Z
LAST-MODIFIED:20250311T170125Z
UID:18994-1742929200-1742932800@www.sumairafoundation.org
SUMMARY:Immunizations for the Immunocompromised
DESCRIPTION:Vaccines play a crucial role in protecting immunocompromised patients\, as their weakened immune systems make them more vulnerable to infections. Vaccines also help prevent the spread of contagious diseases to others. For immunocompromised patients\, the risk of severe illness or complications from diseases such as flu\, pneumonia or COVID-19 is significantly higher\, making vaccination a key preventative measure. Join us for an insightful discussion on March 25th about immunizations for the immunocompromised led by Dr. Elias Sotirchos\, neuroimmunologist and Assistant Professor of Neurology at The Johns Hopkins University School of Medicine. Attendees joining live will have the opportunity to ask Dr. Sotirchos questions about vaccines and immunizations in real time. This program is made possible with support from Alexion.
URL:https://www.sumairafoundation.org/event/immunizations-for-the-immunocompromised/
LOCATION:Virtual: United States\, United States
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/03/Elias-Sotirchos.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Mexico_City:20250619T180000
DTEND;TZID=America/Mexico_City:20250619T190000
DTSTAMP:20260508T012041
CREATED:20250522T123220Z
LAST-MODIFIED:20250522T123220Z
UID:19399-1750356000-1750359600@www.sumairafoundation.org
SUMMARY:Hacer ejercicio con una enfermedad autoimmune
DESCRIPTION:¿Sabías que el ejercicio puede ser un aliado poderoso en la gestión de enfermedades autoinmunes? En este webinar\, exploraremos cómo el deporte puede ayudar a mejorar la calidad de vida. \n  \nÚnase a nosotros el 5 de junio para una presentación y discusión con la Dra. Araceli Reyes Cuayahuitl. Haga clic aquí para registrarse: https://us02web.zoom.us/webinar/register/WN_DeOIgA_qTemWu61Y3RWVJg \n  \nTemas a cubrir: \n• Breve introducción a las enfermedades desmielinizantes \n• Síntomas físicos comunes \n• Importancia de la actividad física en general \n• Evidencia científica del impacto del ejercicio en enfermedades desmielinizantes \n• Tipos de ejercicio recomendados \n  \n¿Qué esperar en el webinar? \n• Información basada en evidencia científica \n• Oportunidad para hacer preguntas e interactuar con expertos \n  \nEste programa es posible gracias al apoyo de Amgen.
URL:https://www.sumairafoundation.org/event/hacer-ejercicio-con-una-enfermedad-autoimmune/
LOCATION:Virtual: Mexico
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2025/05/Araceli-Reyes-Cuayahuitl.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Kuwait:20250909T190000
DTEND;TZID=Asia/Kuwait:20250909T200000
DTSTAMP:20260508T012041
CREATED:20250813T170324Z
LAST-MODIFIED:20250813T170324Z
UID:19971-1757444400-1757448000@www.sumairafoundation.org
SUMMARY:إدارة الأعراض والأمراض المصاحبة مع اضطراب الطيف العصبي البصري
DESCRIPTION:سيناقش هذا الويبينار أحدث الطرق والرؤى حول إدارة الأعراض الأساسية والاعتلالات المصاحبة لاضطراب الطيف العصبي البصري .(NMOSD) \nسيركز المختصون المشاركون على التحديات التي يواجهها المرضى في التعامل مع المرض، وأفضل الممارسات لتحسين جودة الحياة، واستراتيجيات علاجية للتعامل مع الأمراض المصاحبة. سيحظى الحضور أيضًا بفرصة لطرح الأسئلة والنقاش مع الخبراء في هذا المجال
URL:https://www.sumairafoundation.org/event/%d8%a5%d8%af%d8%a7%d8%b1%d8%a9-%d8%a7%d9%84%d8%a3%d8%b9%d8%b1%d8%a7%d8%b6-%d9%88%d8%a7%d9%84%d8%a3%d9%85%d8%b1%d8%a7%d8%b6-%d8%a7%d9%84%d9%85%d8%b5%d8%a7%d8%ad%d8%a8%d8%a9-%d9%85%d8%b9-%d8%a7%d8%b6/
LOCATION:Virtual: Global
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/08/Seraj-Makkawi-Salman-Aljarallah.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Bogota:20251001T180000
DTEND;TZID=America/Bogota:20251001T190000
DTSTAMP:20260508T012041
CREATED:20250910T185924Z
LAST-MODIFIED:20250910T185924Z
UID:20140-1759341600-1759345200@www.sumairafoundation.org
SUMMARY:Yoga Para Todos. Yoga y Vida
DESCRIPTION:Descubre por que el Yoga es para todos y puede ayudarte. El yoga no es esa idea que se tiene de una disciplina física. El Yoga es mas que físico\, es celular\, mental\, intelectual y espiritual: te afecta en todo tu ser.
URL:https://www.sumairafoundation.org/event/yoga-para-todos-yoga-y-vida/
LOCATION:Virtual: Colombia\, Colombia
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/09/Maria-Victoria-Beltran.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20251015T190000
DTEND;TZID=Europe/Paris:20251015T200000
DTSTAMP:20260508T012041
CREATED:20250919T153314Z
LAST-MODIFIED:20250919T153314Z
UID:20210-1760554800-1760558400@www.sumairafoundation.org
SUMMARY:Salute femminile e NMOSD/MOGAD: dialogo su gravidanza\, allattamento e sessualità
DESCRIPTION:Siete tutti invitati al webinar – Salute femminile e NMOSD/MOGAD: dialogo su gravidanza\, allattamento e sessualità  – esclusivo di TSF Italia dedicato alle donne che vivono con NMOSD o MOGAD! \n  \n Data: 15 ottobre alle 19:00 CET \n Relatrice: Dott.ssa Sara Carta\, esperta in Neuroimmunologia presso l’Università di Verona \n Temi: Gravidanza\, Allattamento e Sessualità – aspetti cruciali per una gestione consapevole della salute. \n  \nPartecipando in diretta\, avrete l’opportunità di: \n– Porre domande in tempo reale alla Dott.ssa Carta \n– Condividere esperienze e dubbi in uno *spazio sicuro e accogliente*\, libero da pregiudizi \n– Connettervi con altre persone della comunità NMOSD e MOGAD italiane \n  \n Questo webinar è aperto a pazienti\, caregiver e a tutti coloro interessati a comprendere meglio queste condizioni neuroimmunologiche dal punto di vista della salute femminile. \n  \nQuesto evento è reso possibile grazie al supporto di Alexion. \n  \n Iscriviti ora e unisciti a noi per un momento di condivisione e crescita! https://us02web.zoom.us/webinar/register/WN_I2EUzRCMR9Gdtm92DG6WOA \n  \nTSF Italia si impegna a promuovere la consapevolezza e il sostegno alle persone affette da malattie neuroimmunologiche rare.
URL:https://www.sumairafoundation.org/event/salute-femminile-e-nmosd-mogad-dialogo-su-gravidanza-allattamento-e-sessualita-2/
LOCATION:Virtual: Italy\, Italy
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/09/Sara-Carta-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251105T190000
DTEND;TZID=America/New_York:20251105T200000
DTSTAMP:20260508T012041
CREATED:20251013T225447Z
LAST-MODIFIED:20251013T225447Z
UID:20372-1762369200-1762372800@www.sumairafoundation.org
SUMMARY:Navigating NMOSD in Canada
DESCRIPTION:Calling Canadians impacted by NMOSD: you’re invited for a live patient education webinar about how to navigate life with neuromyelitis optica spectrum disorder in Canada. \nJoin us on Wednesday\, November 5th at 7 PM EST for a live presentation and discussion with Dr. Dalia Rotstein\, neurologist at The University of Toronto and a globally-recognized expert in NMOSD\, who will share insights on diagnosis\, treatment options\, access to care and strategies for managing life with NMOSD in the Canadian healthcare system. \nAttendees joining live will have the opportunity to ask Dr. Rotstein questions in real time. This webinar will be recorded and made available for replay on TSF’s YouTube channel. \nThis program is made possible with support from Alexion and Amgen.
URL:https://www.sumairafoundation.org/event/navigating-nmosd-in-canada/
LOCATION:Virtual: Canada\, Canada
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2025/10/Dalia-Rotstein.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251211T193000
DTEND;TZID=America/New_York:20251211T203000
DTSTAMP:20260508T012041
CREATED:20251129T161135Z
LAST-MODIFIED:20251205T142121Z
UID:20809-1765481400-1765485000@www.sumairafoundation.org
SUMMARY:Every Relapse Matters: The Evolving NMOSD & MOGAD Treatment Landscape in Canada
DESCRIPTION:The Sumaira Foundation Canada is pleased to invite you to an important educational webinar on Thursday\, December 11th at 7:30 PM EST. This session will explore the evolving treatment options for individuals living with AQP4+ NMOSD\, seronegative NMOSD\, and MOGAD in Canada. \nWe will be joined by Dr. Alexandra Muccilli from the University of Toronto\, who will provide an overview of current and emerging treatments for NMOSD and MOGAD and guidance on navigating care pathways in Canada. \nParticipants who join live will have the opportunity to engage directly with Dr. Muccilli during the real-time Q&A. This session will be recorded and made available for replay on TSF’s YouTube channel. \nThis program is made possible with support from Alexion and Amgen.
URL:https://www.sumairafoundation.org/event/every-relapse-matters-the-evolving-nmosd-mogad-treatment-landscape-in-canada/
LOCATION:Virtual: Canada\, Canada
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/11/Alexandra-Muccilli-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251216T190000
DTEND;TZID=America/New_York:20251216T200000
DTSTAMP:20260508T012041
CREATED:20251113T164520Z
LAST-MODIFIED:20251113T164520Z
UID:20706-1765911600-1765915200@www.sumairafoundation.org
SUMMARY:Navigating Insurance Barriers as a Rare Disease Patient
DESCRIPTION:Patients living with rare conditions in the US frequently face extra complexities when seeking access to specialized treatments\, off-label therapies\, or less common care pathways. Prior authorizations may take longer\, documentation requirements may be more intensive\, and appeals may present additional hurdles. \nJoin us on December 16th at 7 PM EST for a special webinar curated specifically for the rare disease community to equip you with clarity\, practical steps\, and confidence to better navigate insurance processes. Our guest speaker\, Joe Touschner (Senior Policy Health Advisor\, National Association of Insurance Commissioners)\, will help demystify key aspects of the health insurance system that often present barriers for rare disease patients and also answer questions from our live audience. \n  \nWhat you’ll learn: \n\nThe basics of prior authorization\nHow to navigate health insurance appeals\nHow insurance rules vary by state and by plan type\, and why state insurance department resources matter.\nKey tools and resources for patients\n\nWho should attend: \n\nIndividuals living with a rare disease and their caregivers\nFamily members interested in advocacy\nPatient advocacy professionals\, case managers\, and support group leaders\nHealthcare professionals who support rare disease patients
URL:https://www.sumairafoundation.org/event/navigating-insurance-barriers-as-a-rare-disease-patient/
LOCATION:Virtual: United States\, United States
CATEGORIES:From The Experts
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Rome:20260127T203000
DTEND;TZID=Europe/Rome:20260127T213000
DTSTAMP:20260508T012041
CREATED:20260108T175644Z
LAST-MODIFIED:20260109T135048Z
UID:21028-1769545800-1769549400@www.sumairafoundation.org
SUMMARY:La terapia cannabinoide: l'importanza dell'informazione e del controllo medico
DESCRIPTION:Unisciti a noi il 27 gennaio per un webinar speciale dedicato alla terapia con cannabinoidi come opzione terapeutica valida e sicura per le malattie croniche.  \nSarà con noi Elisabetta Biavati\, donna che convive con atassia cerebellare e sindrome di Arnold Chiari\, in terapia con cannabis medica dal 2016. Elisabetta è un’attivista per i diritti delle persone in trattamento con cannabinoidi ed è stata Presidente di Associazione Pazienti Cannabis Medica Aps. \nDurante il webinar\, Elisabetta condividerà la sua esperienza personale e fornirà informazioni fondamentali per i pazienti\, tra cui: \n\nla differenza tra uso ricreativo e uso terapeutico basato su evidenze scientifiche\ni farmaci a base di cannabis prescrivibili secondo il Decreto Lorenzin (Legge 119/2017)\nla copertura delle prescrizioni da parte del Servizio Sanitario Nazionale\nl’importanza della supervisione medica e le interazioni con altre sostanze\ni possibili effetti collaterali della terapia con cannabinoidi\nl’importanza della formazione dei medici\n\nPartecipa a questo approfondimento: i partecipanti in diretta potranno porre domande a Elisabetta in tempo reale. Il webinar sarà registrato e reso disponibile in replay. \nQuesto programma è reso possibile grazie al supporto di Amgen e Alexion.
URL:https://www.sumairafoundation.org/event/la-terapia-cannabinoide-limportanza-dellinformazione-e-del-controllo-medico/
LOCATION:Virtual: Italy\, Italy
CATEGORIES:From The Experts,TSF Webinar
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Mexico_City:20260221T100000
DTEND;TZID=America/Mexico_City:20260221T110000
DTSTAMP:20260508T012041
CREATED:20260128T163248Z
LAST-MODIFIED:20260128T163248Z
UID:21169-1771668000-1771671600@www.sumairafoundation.org
SUMMARY:Generalidades de Encefalitis Autoinmune
DESCRIPTION:Con motivo del Día Mundial de la Encefalitis 2026\, nos complace contar con la participación de la Dra. Nicole Somerville Briones\, quien ofrecerá una visión general de la encefalitis autoinmune y abordará aspectos clave como el diagnóstico\, el manejo de los síntomas\, los tratamientos y más. Acompáñanos el 21 de febrero para una conversación dinámica. Quienes se conecten en directo podrán hacer preguntas a la Dra. Somerville en tiempo real. \nNicole Somerville Briones es médica cirujana de la Universidad Anáhuac (México) con Master en Neurociencias (MSc Brain and Mind Sciences) en el Queen Square Institute of Neurology\, parte de University College London\, en el Reino Unido. Participó en un proyecto de investigación sobre Encefalitis Autoinmune. \nPara registrarte\, visita: https://us02web.zoom.us/webinar/register/WN_xFgbNRGVTFitJ87rp1M6bQ
URL:https://www.sumairafoundation.org/event/generalidades-de-encefalitis-autoinmune/
LOCATION:Virtual: Mexico
CATEGORIES:From The Experts
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260324T130000
DTEND;TZID=America/New_York:20260324T140000
DTSTAMP:20260508T012041
CREATED:20260302T162110Z
LAST-MODIFIED:20260304T101921Z
UID:21398-1774357200-1774360800@www.sumairafoundation.org
SUMMARY:Terapie per la NMOSD in Italia
DESCRIPTION:In soli cinque anni\, la comunità NMOSD è passata da zero terapie approvate a quattro — un traguardo straordinario\, soprattutto considerando che solo circa il 5% delle malattie rare dispone di una terapia approvata. \nUnitevi a noi il 24 marzo: saremo in compagnia del Dr. Raffaele Iorio\, neuroimmunologo di Roma\, che presenterà una panoramica delle terapie per la NMOSD disponibili in Italia e illustrerà i principali progressi degli ultimi cinque anni\, seguita da una sessione di domande e risposte. https://us02web.zoom.us/webinar/register/WN_-pGC67FzTAqv8u9FRZGbWw \nIl webinar sarà registrato e reso disponibile per la visione successiva. \nQuesto programma educativo è stato realizzato con il supporto di Amgen. \n 
URL:https://www.sumairafoundation.org/event/terapie-per-la-nmosd-in-italia/
LOCATION:Virtual: Italy\, Italy
CATEGORIES:From The Experts
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END:VEVENT
END:VCALENDAR