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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251009T200000
DTEND;TZID=America/New_York:20251009T210000
DTSTAMP:20260403T182110
CREATED:20250730T212759Z
LAST-MODIFIED:20251010T163135Z
UID:19874-1760040000-1760043600@www.sumairafoundation.org
SUMMARY:TSF's Human Collective Project Meetings
DESCRIPTION:The Human Collective Project (HCP) is TSF’s support group meeting offered to anyone who has been affected/impacted by NMOSD/MOGAD. The program came into existence during the height of the COVID-19 pandemic in 2020\, when most NMOSD/MOGAD felt particularly isolated and vulnerable to the coronavirus as immunosuppressed/immunocompromised members of society. The isolation many of us experienced unveiled a great need and opportunity for us to connect in a meaningful way to offer our support to one another. \nSince 2020\, we have expanded the program to offer more sessions in multiple geographies to ensure that everyone in the NMOSD/MOGAD communities feels welcomed and included. As we always say\, HCP is a great way to meet others in similar circumstances in this rare community; it is a safe space to laugh\, cry\, vent\, share wins\, etc. This program is driven and led by TSF Patient and Caregiver Ambassadors worldwide.
URL:https://www.sumairafoundation.org/event/tsfs-human-collective-project-meetings-47/
LOCATION:Virtual: United States\, United States
CATEGORIES:Support Group,TSF Programming
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/10/Human-Collective-Project-Web-Banner.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Warsaw:20251014T180000
DTEND;TZID=Europe/Warsaw:20251014T190000
DTSTAMP:20260403T182110
CREATED:20250928T160219Z
LAST-MODIFIED:20251009T001857Z
UID:20237-1760464800-1760468400@www.sumairafoundation.org
SUMMARY:Zrozumienie MOGAD i znaczenia udziału pacjentów w badaniach klinicznych
DESCRIPTION:Czy Ciebie lub kogoś bliskiego dotknęła plaga MOGAD? \nDołącz do nas 14 października o godzinie 18:00 czasu środkowoeuropejskiego\, aby zapoznać się z eksperckim przeglądem MOGAD\, obejmującym objawy\, rokowania i leczenie\, a następnie z inspirującą dyskusją na temat badań klinicznych. W webinarium wezmą udział dr Robert Bonek\, dr Maciej Juryńczyk i dr Paweł Wrona. \nUczestnicy na żywo będą mieli okazję zadać pytania ekspertom. Webinarium zostanie nagrane i udostępnione do odtworzenia na kanale TSF w serwisie YouTube. \nProgram ten jest możliwy dzięki wsparciu UCB.
URL:https://www.sumairafoundation.org/event/zrozumienie-mogad-i-znaczenia-udzialu-pacjentow-w-badaniach-klinicznych/
LOCATION:Virtual: Poland\, Poland
CATEGORIES:Understanding MOGAD
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2025/09/POLISH.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20251015T190000
DTEND;TZID=Europe/Paris:20251015T200000
DTSTAMP:20260403T182110
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/Los_Angeles:20251018T110000
DTEND;TZID=America/Los_Angeles:20251018T170000
DTSTAMP:20260403T182110
CREATED:20250822T164117Z
LAST-MODIFIED:20250912T134018Z
UID:20009-1760785200-1760806800@www.sumairafoundation.org
SUMMARY:Seattle Patient Day for Rare Neuroinflammatory Disorders
DESCRIPTION:We’re coming to Seattle! \nAre you an AE*\, CNS Vasculitis\, MOGAD*\, neurosarcoidosis\, NMOSD* or SPS* patient\, partner\, care-partner\, clinician\, nurse\, researcher and/or advocate from the Pacific Northwest region? You’re invited to our event on Saturday\, October 18th at the UW Medicine Neurosciences Institute. \nJoin us for a day of education\, community\, and fun to: \n\nMeet local patients\, partners\, care-partners and clinicians\nAsk experts questions in real time about symptom management\, treatments and therapies\, co-morbidities and more\nLearn about updates on the latest research and findings from local key opinion leaders\n\nThis event is being organized in collaboration with Dr. Shuvro Roy at the UW Medicine Neurosciences Institute\, Dr. Pavle Repovic at Swedish Neuroscience Institute and in partnership with Autoimmune Encephalitis Alliance and The Stiff Person Syndrome Research Foundation. Registration is free and lunch will be served. We can’t wait to see you in Seattle! \n— \nAE stands for autoimmune encephalitis \nMOGAD stands for myelin oligodendrocyte glycoprotein antibody-associated disorder \nNMOSD stands for neuromyelitis optica spectrum disorder \nSPS stands for stiff person syndrome
URL:https://www.sumairafoundation.org/event/seattle-patient-day-for-rare-neuroinflammatory-disorders/
LOCATION:University of Washington\, 4295 Little Canoe Channel NE\, Seattle\, WA\, 98195\, United States
CATEGORIES:TSF Patient Day
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/08/Seattle-Patient-Day-2025-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251022T190000
DTEND;TZID=Europe/London:20251022T200000
DTSTAMP:20260403T182110
CREATED:20251008T154342Z
LAST-MODIFIED:20251008T154342Z
UID:20285-1761159600-1761163200@www.sumairafoundation.org
SUMMARY:Human Collective Project | United Kingdom
DESCRIPTION:The Human Collective Project (HCP) is a community initiative for people living with NMOSD\, MOGAD and other rare neuroimmune diseases\, to come together in a safe\, confidential and encouraging space. These gatherings are not recorded and allow for everyone to speak openly and honestly without worry. HCP is more about than just a discussion\, it’s about connection and belonging.
URL:https://www.sumairafoundation.org/event/human-collective-project-united-kingdom/
LOCATION:Virtual: United Kingdom\, United Kingdom
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2025/10/UK-HCP-Visuals-169-Facebook-Cover.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251027T200000
DTEND;TZID=America/New_York:20251027T210000
DTSTAMP:20260403T182110
CREATED:20251008T180110Z
LAST-MODIFIED:20251008T180110Z
UID:20297-1761595200-1761598800@www.sumairafoundation.org
SUMMARY:Human Collective Project | Mental Health Mondays
DESCRIPTION:The Mental Health Monday meetings began as a way to address the various mental and emotional concerns that individuals experience when dealing with rare neuroimmune diseases. Patients\, caregivers\, and loved ones ride the rollercoaster of feelings throughout their daily lives\, from the moment of symptom onset. Often\, getting the proper diagnosis is a journey of its own\, and dealing with life’s difficulties after that can include stressors that only others in your situation may understand. These meetings will offer a safe space for people to come together\, share their stories\, and highlight how they are coping with everyday challenges. We will discuss a range of mental health topics and have occasional special guest speakers join our meetings. So\, whether you are newly diagnosed or a seasoned zebra\, we hope to provide a space to help guide personal growth.
URL:https://www.sumairafoundation.org/event/human-collective-project-mental-health-mondays/
LOCATION:Virtual: United States\, United States
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/10/HCP-Master-169-Facebook-Cover-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251105T190000
DTEND;TZID=America/New_York:20251105T200000
DTSTAMP:20260403T182110
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:20251108T110000
DTEND;TZID=America/New_York:20251108T170000
DTSTAMP:20260403T182110
CREATED:20250930T184424Z
LAST-MODIFIED:20251008T032147Z
UID:20250-1762599600-1762621200@www.sumairafoundation.org
SUMMARY:Toronto Patient Day for Rare Neuroinflammatory Disorders
DESCRIPTION:We’re coming to Toronto! \nAre you an AE*\, MG*\, MOGAD* or NMOSD* patient\, partner\, care-partner\, clinician\, nurse\, researcher and/or advocate in Canada? You’re invited to our event on Saturday\, November 8th. \nJoin us for a day of education\, community\, and fun to: \n\nMeet local patients\, partners\, care-partners and clinicians\nAsk experts questions in real time about symptom management\, treatments and therapies\, co-morbidities and more\nLearn about updates on the latest research and findings from local key opinion leaders\n\nThis event is being organized in collaboration with Dr. Dalia Rotstein at the University of Toronto\, Dr. Ann Yeh from SickKids and in partnership with Muscular Dystrophy Canada. \nRegistration is free and lunch will be served. We can’t wait to see you in Toronto! \nThe Sumaira Foundation team \n\n\n— \nAE stands for autoimmune encephalitis\nMG stands for myasthenia gravis\nMOGAD stands for myelin oligodendrocyte glycoprotein antibody-associated disorder\nNMOSD stands for neuromyelitis optica spectrum disorder
URL:https://www.sumairafoundation.org/event/toronto-patient-day-for-rare-neuroinflammatory-disorders/
LOCATION:The Conference Centre at the OBA\, 20 Toronto Street Toronto\, ON\, M5C 2B8\, Canada
CATEGORIES:Patient Days
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/09/Toronto-Patient-Day-1920x1080-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Kolkata:20251109T200000
DTEND;TZID=Asia/Kolkata:20251109T210000
DTSTAMP:20260403T182110
CREATED:20251031T152156Z
LAST-MODIFIED:20251031T152156Z
UID:20611-1762718400-1762722000@www.sumairafoundation.org
SUMMARY:Human Collective Project – India Online Meeting
DESCRIPTION:We warmly invite you to join our upcoming Human Collective Project (HCP) meeting for the Indian rare neuroimmune community\, taking place online via Zoom. Our special guest speaker\, Dr. Garima Yadav\, a respected physical therapist\, will share valuable insights on maintaining physical wellbeing while living with rare neuroimmune conditions\, followed by an engaging Question and Answer session. \nThe Human Collective Project\, led by TSF Ambassadors\, is a heartfelt initiative that brings together individuals and caregivers affected by rare neuroimmune conditions. It offers a safe and supportive space to connect\, share experiences\, and build a sense of community and understanding.
URL:https://www.sumairafoundation.org/event/human-collective-project-india-online-meeting/
LOCATION:Virtual: India\, India
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2025/10/INDIA-1-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Athens:20251110T180000
DTEND;TZID=Europe/Athens:20251110T190000
DTSTAMP:20260403T182110
CREATED:20251013T232500Z
LAST-MODIFIED:20251013T232703Z
UID:20377-1762797600-1762801200@www.sumairafoundation.org
SUMMARY:Κατανόηση της MOGAD και της σημασίας της συμμετοχής των ασθενών σε κλινικές δοκιμές
DESCRIPTION:Εσείς ή κάποιος που αγαπάτε επηρεάζεστε από το MOGAD; \nΣας προσκαλούμε να συμμετάσχετε στο επερχόμενο πρόγραμμά μας αφιερωμένο στην MOGAD τη Δευτέρα 10 Νοεμβρίου στις 6 μ.μ. EET. \nΘα συμμετάσχουν ο Καθηγητής Νικόλας Γρηγοριάδης και η Δρ. Έλμα Ευαγγελοπούλου\, οι οποίοι θα συζητήσουν τα συμπτώματα\, τις θεραπείες και τις κλινικές δοκιμές της MOGAD. \nΟι συμμετέχοντες που θα συμμετάσχουν ζωντανά θα έχουν την ευκαιρία να θέσουν ερωτήσεις στους ειδικούς. Αυτό το διαδικτυακό σεμινάριο θα ηχογραφηθεί και θα είναι διαθέσιμο στο κανάλι YouTube του TSF. \nΑυτό το πρόγραμμα καθίσταται δυνατό με την υποστήριξη του UCB.
URL:https://www.sumairafoundation.org/event/%ce%ba%ce%b1%cf%84%ce%b1%ce%bd%cf%8c%ce%b7%cf%83%ce%b7-%cf%84%ce%b7%cf%82-mogad-%ce%ba%ce%b1%ce%b9-%cf%84%ce%b7%cf%82-%cf%83%ce%b7%ce%bc%ce%b1%cf%83%ce%af%ce%b1%cf%82-%cf%84%ce%b7%cf%82-%cf%83%cf%85/
LOCATION:Virtual: Global
CATEGORIES:Understanding MOGAD
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2025/10/GREEK.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251116T110000
DTEND;TZID=America/New_York:20251116T120000
DTSTAMP:20260403T182110
CREATED:20251008T155726Z
LAST-MODIFIED:20251008T155726Z
UID:20290-1763290800-1763294400@www.sumairafoundation.org
SUMMARY:Human Collective Project | Caregivers
DESCRIPTION:The Caregivers Human Collective Project (HCP) is a groundbreaking support group hosted by The Sumaira Foundation\, created specifically for caregivers of individuals living with rare neuroimmune diseases like NMOSD and MOGAD. This first-of-its-kind session offers a safe\, inclusive space for family members\, partners\, siblings\, children\, and loved ones to connect\, share\, and be heard. Led by our dedicated Caregiver Ambassadors\, who bring their own lived experience and empathy to the conversation\, participants can expect heartfelt conversations\, mutual support\, and practical insights into the caregiving journey. Whether you’re navigating the emotional\, physical\, or logistical challenges of caregiving\, this group is designed to uplift and empower you through community\, compassion\, and connection.
URL:https://www.sumairafoundation.org/event/human-collective-project-caregivers/
LOCATION:Virtual: Global
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2025/10/Caregiver-Visual-FB.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Amsterdam:20251118T200000
DTEND;TZID=Europe/Amsterdam:20251118T210000
DTSTAMP:20260403T182110
CREATED:20251008T173035Z
LAST-MODIFIED:20251009T150856Z
UID:20294-1763496000-1763499600@www.sumairafoundation.org
SUMMARY:Het belang van deelname van mensen met MOGAD aan onderzoek\, met als doel de ziekte beter te begrijpen en behandelen
DESCRIPTION:Bent u of kent u iemand die getroffen is door MOGAD? U bent uitgenodigd voor een webinar over MOGAD en klinische studies op 18 november. \nWe zullen worden vergezeld door prof. Barbara Willekens en prof. Guy Laurys\, die een overzicht geven van MOG-antilichaamziekte\, klinische studies en hoe patiënten kunnen deelnemen aan MOG-gerelateerde klinische studies voor toekomstige therapieopties. Dit online patiëntenvoorlichtingsevenement wordt gemodereerd door Saskia\, wiens moeder de diagnose MOGAD kreeg. \nAanwezigen die live deelnemen\, kunnen de experts in realtime vragen stellen. \nDit webinar wordt opgenomen en beschikbaar gesteld voor herhaling op het YouTube-kanaal van TSF. \nDit programma is mogelijk gemaakt met steun van UCB.
URL:https://www.sumairafoundation.org/event/het-belang-van-deelname-van-mensen-met-mogad-aan-onderzoek-met-als-doel-de-ziekte-beter-te-begrijpen-en-behandelen/
LOCATION:Virtual: Amsterdam\, Netherlands
CATEGORIES:Understanding MOGAD
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/10/DUTCH-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Rome:20251122T123000
DTEND;TZID=Europe/Rome:20251122T193000
DTSTAMP:20260403T182110
CREATED:20250923T185141Z
LAST-MODIFIED:20251014T165913Z
UID:20228-1763814600-1763839800@www.sumairafoundation.org
SUMMARY:3° Giornata dedicata da malattie neuroimmunologiche rare - Roma
DESCRIPTION:TSF Italia è lieta di invitare tutti i pazienti italiani affetti da encefalite autoimmune\, miastenia grave\, MOGAD e NMOSD\, i loro caregiver e i medici interessati a queste patologie a partecipare a questa giornata di formazione\, convivialità e divertimento. \nIn collaborazione con il Dott. Raffaele Iorio del Policlinico Universitario Agostino Gemelli e in partnership con l’Associazione Italiana Miastenia (AIM)\, TSF Italia è lieta di invitarvi alla 3° Giornata dedicata a pazienti\, caregiver e medici. \n\n\nQuesto evento a libera iscrizione vi permetterà di: \n\nIncontrare pazienti italiani \, i loro caregivers ed i clinici esperti di queste patologie\nPorre domande agli esperti in diretta relative alla gestione dei sintomi\, le terapie\, le comorbidità e molto altro\nAggiornarvi in merito alle ultime ricerche scientifiche con l’aiuto di medici esperti italiani\nFare rete e instaurare connessioni con la comunità locale\n\nL’evento è gratuito e il pranzo sarà offerto da noi.
URL:https://www.sumairafoundation.org/event/3-giornata-dedicata-da-malattie-neuroimmunologiche-rare-roma/
LOCATION:Nazionale Spazio Eventi (Roma)\, Via Palermo\, 10\, Roma\, 00184\, Italy
CATEGORIES:Patient Days
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/09/Rome-Patient-Day-2025-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251027T200000
DTEND;TZID=America/New_York:20251027T210000
DTSTAMP:20260403T182110
CREATED:20251008T180110Z
LAST-MODIFIED:20251008T180110Z
UID:20297-1761595200-1761598800@www.sumairafoundation.org
SUMMARY:Human Collective Project | Mental Health Mondays
DESCRIPTION:The Mental Health Monday meetings began as a way to address the various mental and emotional concerns that individuals experience when dealing with rare neuroimmune diseases. Patients\, caregivers\, and loved ones ride the rollercoaster of feelings throughout their daily lives\, from the moment of symptom onset. Often\, getting the proper diagnosis is a journey of its own\, and dealing with life’s difficulties after that can include stressors that only others in your situation may understand. These meetings will offer a safe space for people to come together\, share their stories\, and highlight how they are coping with everyday challenges. We will discuss a range of mental health topics and have occasional special guest speakers join our meetings. So\, whether you are newly diagnosed or a seasoned zebra\, we hope to provide a space to help guide personal growth.
URL:https://www.sumairafoundation.org/event/human-collective-project-mental-health-mondays/
LOCATION:Virtual: United States\, United States
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/10/HCP-Master-169-Facebook-Cover-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20251129T130000
DTEND;TZID=Europe/Paris:20251130T130000
DTSTAMP:20260403T182110
CREATED:20250915T142820Z
LAST-MODIFIED:20250915T142820Z
UID:20188-1764421200-1764507600@www.sumairafoundation.org
SUMMARY:3ème week-end Patients et Aidants NMOSD & MOGAD - Lyon
DESCRIPTION:TSF France\, en partenariat avec le MIRCEM\, présente le 3ème week-end Patients et Aidants de la NMOSD et de la MOGAD les 29 et 30 novembre à Lyon ! \nL’évènement\, complétement gratuit\, aura lieu au Mama Shelter de Lyon\, rue Domer\, les 29 et 30 novembre 2025. \nNous sommes ravis d’être accompagnés par les experts du MIRCEM et de nombreux autres intervenants qui nous rejoignent pour ces deux journées d’information. \nVenez rencontrer les acteurs de la NMOSD et la MOGAD\, suivre nos ateliers mais surtout échanger avec d’autres Patients et Aidants qui vivent la même chose que vous. \nVenez mettre en lumière la NMOSD et la MOGAD avec TSF France. \nÀ bientôt! \nL’équipe TSF France (Anass\, Bérengère\, Claire\, Elodie\, Emma\, Fatiha\, Nassima\, Natasha\, Nelly et Selma) \nEnvoyez vos questions à: Berengere@sumairafoundation.org ou guillaume@sumairafoundation.org \nAccès par le métro Station Jean MACE – Parking public à proximité
URL:https://www.sumairafoundation.org/event/3eme-week-end-patients-et-aidants-nmosd-mogad-lyon/
LOCATION:Mama Shelter Lyon\, 13 Rue Domer\, Lyon\, 69007\, France
CATEGORIES:TSF France,TSF Patient Day
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2025/09/https-cdn.evbuc_.com-images-1121221683-132744545551-1-original.20250911-144625.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251211T193000
DTEND;TZID=America/New_York:20251211T203000
DTSTAMP:20260403T182110
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:20251214T110000
DTEND;TZID=America/New_York:20251214T120000
DTSTAMP:20260403T182110
CREATED:20251204T203122Z
LAST-MODIFIED:20251204T203122Z
UID:20827-1765710000-1765713600@www.sumairafoundation.org
SUMMARY:TSF HCP Caregivers
DESCRIPTION:The Caregivers Human Collective Project (HCP) is a groundbreaking support group hosted by The Sumaira Foundation\, created specifically for caregivers of individuals living with rare neuroimmune diseases like NMOSD and MOGAD. This first-of-its-kind session offers a safe\, inclusive space for family members\, partners\, siblings\, children\, and loved ones to connect\, share\, and be heard. Led by our dedicated Caregiver Ambassadors\, who bring their own lived experience and empathy to the conversation\, participants can expect heartfelt conversations\, mutual support\, and practical insights into the caregiving journey. Whether you’re navigating the emotional\, physical\, or logistical challenges of caregiving\, this group is designed to uplift and empower you through community\, compassion\, and connection.
URL:https://www.sumairafoundation.org/event/tsf-hcp-caregivers/
LOCATION:Virtual: Global
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2025/12/HCP-Caregiver-Visual.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251216T190000
DTEND;TZID=America/New_York:20251216T200000
DTSTAMP:20260403T182110
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
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/11/a1164bbf-cc55-45a9-93aa-7561e55aa54c.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Bogota:20251216T190000
DTEND;TZID=America/Bogota:20251216T200000
DTSTAMP:20260403T182110
CREATED:20251204T201141Z
LAST-MODIFIED:20251204T201141Z
UID:20824-1765911600-1765915200@www.sumairafoundation.org
SUMMARY:Grupo de Apoyo + Charla Enfocado en Salud Mental
DESCRIPTION:En compañía de una psicóloga\, una neurologa (ambas embajadores de TSF) y un psiquiatra\, trataremos temas enfocados en salud mental. Una parte muy importante pero a veces ignorada por pacientes y cuidadores\, del tratamiento integral que necesitan los pacientes de enfermedades neuroinmunes raras.
URL:https://www.sumairafoundation.org/event/grupo-de-apoyo-charla-enfocado-en-salud-mental/
LOCATION:Virtual: Colombia\, Colombia
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/12/2_20251202_103204_0001.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Istanbul:20251223T160000
DTEND;TZID=Europe/Istanbul:20251223T170000
DTSTAMP:20260403T182110
CREATED:20251210T204842Z
LAST-MODIFIED:20251210T204842Z
UID:20857-1766505600-1766509200@www.sumairafoundation.org
SUMMARY:MOGAD Hakkında Güncel Gelişmeler ve Tedaviler
DESCRIPTION:Siz veya sevdiğiniz biri MOG antikor hastalığından etkileniyor mu? \n23 Aralık Salı günü saat 16:00’da MOGAD’a özel bir web seminerine katılmanızı rica ediyoruz. Prof. Dr. Murat Kürtüncü\, Prof. Dr. Murat Terzi ve Prof. Dr. Emine Rabia Koç\, MOG antikor hastalığı\, klinik çalışmalar ve hastaların gelecekteki tedavi seçenekleri için MOG ile ilgili klinik çalışmalara nasıl katılabilecekleri hakkında genel bir bakış sunacak. \nCanlı olarak katılan katılımcılar\, uzmanlara gerçek zamanlı olarak soru sorma fırsatına sahip olacaklar. Bu web semineri kaydedilecek ve TSF’nin YouTube kanalında tekrar izlenebilecek. \nBu program\, UCB’nin desteğiyle mümkün olmuştur.
URL:https://www.sumairafoundation.org/event/mogad-hakkinda-guncel-gelismeler-ve-tedaviler/
LOCATION:virtual: Turkey\, Turkey
CATEGORIES:Understanding MOGAD
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2025/12/TURKISH.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251229T200000
DTEND;TZID=America/New_York:20251229T210000
DTSTAMP:20260403T182110
CREATED:20251220T000651Z
LAST-MODIFIED:20251220T145820Z
UID:20886-1767038400-1767042000@www.sumairafoundation.org
SUMMARY:Human Collective Project | Mental Health Mondays
DESCRIPTION:The Mental Health Monday meetings began as a way to address the various mental and emotional concerns that individuals experience when dealing with rare neuroimmune diseases. Patients\, caregivers\, and loved ones ride the rollercoaster of feelings throughout their daily lives\, from the moment of symptom onset. Often\, getting the proper diagnosis is a journey of its own\, and dealing with life’s difficulties after that can include stressors that only others in your situation may understand. These meetings will offer a safe space for people to come together\, share their stories\, and highlight how they are coping with everyday challenges. We will discuss a range of mental health topics and have occasional special guest speakers join our meetings. So\, whether you are newly diagnosed or a seasoned zebra\, we hope to provide a space to help guide personal growth.
URL:https://www.sumairafoundation.org/event/human-collective-project-mental-health-mondays-2/
LOCATION:Virtual: United States\, United States
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/10/HCP-Master-169-Facebook-Cover-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260111T110000
DTEND;TZID=America/New_York:20260111T120000
DTSTAMP:20260403T182110
CREATED:20260103T205601Z
LAST-MODIFIED:20260107T192746Z
UID:20969-1768129200-1768132800@www.sumairafoundation.org
SUMMARY:TSF HCP Caregivers: Becoming a Resilient Caregiver
DESCRIPTION:The Caregivers Human Collective Project (HCP) is a groundbreaking support group hosted by The Sumaira Foundation\, created specifically for caregivers of individuals living with rare neuroimmune diseases like NMOSD and MOGAD. This first-of-its-kind session offers a safe\, inclusive space for family members\, partners\, siblings\, children\, and loved ones to connect\, share\, and be heard. Led by our dedicated Caregiver Ambassadors\, who bring their own lived experience and empathy to the conversation\, participants can expect heartfelt conversations\, mutual support\, and practical insights into the caregiving journey. Whether you’re navigating the emotional\, physical\, or logistical challenges of caregiving\, this group is designed to uplift and empower you through community\, compassion\, and connection.
URL:https://www.sumairafoundation.org/event/tsf-hcp-caregivers-becoming-a-resilient-caregiver/
LOCATION:Virtual: Global
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2026/01/HCP-Caregiver-Visual-.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260115T200000
DTEND;TZID=America/New_York:20260115T210000
DTSTAMP:20260403T182110
CREATED:20260112T151551Z
LAST-MODIFIED:20260112T151849Z
UID:21047-1768507200-1768510800@www.sumairafoundation.org
SUMMARY:TSF's Human Collective Project Meetings
DESCRIPTION:The Human Collective Project (HCP) is TSF’s support group meeting offered to anyone who has been affected/impacted by NMOSD/MOGAD. The program came into existence during the height of the COVID-19 pandemic in 2020\, when most NMOSD/MOGAD felt particularly isolated and vulnerable to the coronavirus as immunosuppressed/immunocompromised members of society. The isolation many of us experienced unveiled a great need and opportunity for us to connect in a meaningful way to offer our support to one another. Since 2020\, we have expanded the program to offer more sessions in multiple geographies to ensure that everyone in the NMOSD/MOGAD communities feels welcomed and included. As we always say\, HCP is a great way to meet others in similar circumstances in this rare community; it is a safe space to laugh\, cry\, vent\, share wins\, etc. This program is driven and led by TSF Patient and Caregiver Ambassadors worldwide.
URL:https://www.sumairafoundation.org/event/tsfs-human-collective-project-meetings-48/
LOCATION:Virtual: Global
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2026/01/580539276_814407297887099_8833406591562928552_n.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Bogota:20260119T000000
DTEND;TZID=America/Bogota:20260119T170000
DTSTAMP:20260403T182110
CREATED:20251220T001931Z
LAST-MODIFIED:20251220T001931Z
UID:20888-1768780800-1768842000@www.sumairafoundation.org
SUMMARY:Grupo de apoyo enfocado en Cuidadores
DESCRIPTION:Los cuidadores de pacientes con enfermedades neuroinmunes como NMOSD\, MOGAD\, etc.. también necesitan un espacio para expresar sus sentimientos y emociones. Este espacio es para los cuidadores y será dirigido por Ingrid : Embajadora de TSF y paciente NMOSD y su esposo y cuidador Juan Pablo.
URL:https://www.sumairafoundation.org/event/grupo-de-apoyo-enfocado-en-cuidadores/
LOCATION:Virtual: Colombia\, Colombia
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/12/3675.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260124T100000
DTEND;TZID=America/New_York:20260124T170000
DTSTAMP:20260403T182110
CREATED:20251218T173459Z
LAST-MODIFIED:20260108T173335Z
UID:20879-1769248800-1769274000@www.sumairafoundation.org
SUMMARY:Día del Paciente para Trastornos Neuroinflamatorios Raros - Puerto Rico
DESCRIPTION:¡TSF llega a Puerto Rico el sábado 24 de enero 2026! \nInvitamos a pacientes\, cuidadores\, médicos\, enfermeros\, investigadores y defensores de los pacientes a unirse a nosotros en un día especial dedicado a los trastornos neuroinflamatorios raros. Si usted o un ser querido se ven afectados por alguno de los trastornos que se enumeran a continuación: \n¡Esperamos verlos allí! \n\nEncefalitis autoinmune (EA)\nMOGAD\nNeurosarcoidosis\nNMOSD\nSíndrome de la persona rígida\n\nÚnase a nosotros para un día de aprendizaje\, comunidad y diversión: \n\nPodran conocer a pacientes\, cuidadores y profesionales de la salud de todo Puerto Rico.\nHaga preguntas a expertos en tiempo real sobre el manejo de los síntomas\, tratamientos y terapias\, comorbilidades y mucho más.\nInfórmese sobre las últimas investigaciones y descubrimientos de la mano de expertos.\n\nEste evento se organiza en colaboración con el Dr. José Ávila y la Dra. Patricia De Jesús del Centro de Esclerosis Múltiple de Puerto Rico. La inscripción es gratuita y se servirá almuerzo. \n¡Tenemos muchas ganas de verlos en Puerto Rico! \nLa Fundación Sumaira
URL:https://www.sumairafoundation.org/event/dia-del-paciente-para-trastornos-neuroinflamatorios-raros-puerto-rico/
LOCATION:Hyatt Centric San Juan – Isla Verde\, 8020 José M. Tartak Ave\, Carolina\, Puerto Rico\, 00979\, United States Minor Outlying Islands
CATEGORIES:Community Event,TSF Patient Day
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/12/Puerto-Rico-Patient-Day-2026-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260126T200000
DTEND;TZID=America/New_York:20260126T210000
DTSTAMP:20260403T182110
CREATED:20260126T221135Z
LAST-MODIFIED:20260126T221135Z
UID:21137-1769457600-1769461200@www.sumairafoundation.org
SUMMARY:Human Collective Project | Mental Health Mondays
DESCRIPTION:The Mental Health Monday meetings began as a way to address the various mental and emotional concerns that individuals experience when dealing with rare neuroimmune diseases. Patients\, caregivers\, and loved ones ride the rollercoaster of feelings throughout their daily lives\, from the moment of symptom onset. Often\, getting the proper diagnosis is a journey of its own\, and dealing with life’s difficulties after that can include stressors that only others in your situation may understand. These meetings will offer a safe space for people to come together\, share their stories\, and highlight how they are coping with everyday challenges. We will discuss a range of mental health topics and have occasional special guest speakers join our meetings. So\, whether you are newly diagnosed or a seasoned zebra\, we hope to provide a space to help guide personal growth.
URL:https://www.sumairafoundation.org/event/human-collective-project-mental-health-mondays-3/
LOCATION:Virtual: United States\, United States
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/10/HCP-Master-169-Facebook-Cover-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260126T200000
DTEND;TZID=America/New_York:20260126T210000
DTSTAMP:20260403T182110
CREATED:20260126T221135Z
LAST-MODIFIED:20260126T221135Z
UID:21137-1769457600-1769461200@www.sumairafoundation.org
SUMMARY:Human Collective Project | Mental Health Mondays
DESCRIPTION:The Mental Health Monday meetings began as a way to address the various mental and emotional concerns that individuals experience when dealing with rare neuroimmune diseases. Patients\, caregivers\, and loved ones ride the rollercoaster of feelings throughout their daily lives\, from the moment of symptom onset. Often\, getting the proper diagnosis is a journey of its own\, and dealing with life’s difficulties after that can include stressors that only others in your situation may understand. These meetings will offer a safe space for people to come together\, share their stories\, and highlight how they are coping with everyday challenges. We will discuss a range of mental health topics and have occasional special guest speakers join our meetings. So\, whether you are newly diagnosed or a seasoned zebra\, we hope to provide a space to help guide personal growth.
URL:https://www.sumairafoundation.org/event/human-collective-project-mental-health-mondays-3/
LOCATION:Virtual: United States\, United States
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/10/HCP-Master-169-Facebook-Cover-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Rome:20260127T203000
DTEND;TZID=Europe/Rome:20260127T213000
DTSTAMP:20260403T182110
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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BEGIN:VEVENT
DTSTART;TZID=Africa/Johannesburg:20260128T190000
DTEND;TZID=Africa/Johannesburg:20260128T200000
DTSTAMP:20260403T182110
CREATED:20260127T151459Z
LAST-MODIFIED:20260127T151459Z
UID:21148-1769626800-1769630400@www.sumairafoundation.org
SUMMARY:HCP South Africa
DESCRIPTION:The Human Collective Project (HCP) is TSF’s support group meeting offered to anyone who has been affected/impacted by NMOSD/MOGAD. The program came into existence during the height of the COVID-19 pandemic in 2020\, when most NMOSD/MOGAD felt particularly isolated and vulnerable to the coronavirus as immunosuppressed/immunocompromised members of society. The isolation many of us experienced unveiled a great need and opportunity for us to connect in a meaningful way to offer our support to one another.  Since 2020\, we have expanded the program to offer more sessions in multiple geographies to ensure that everyone in the Rare Neuroimmune community feels welcomed and included. As we always say\, HCP is a great way to meet others in similar circumstances in this rare community; it is a safe space to laugh\, cry\, vent\, share wins\, etc. This program is driven and led by TSF Patient and Caregiver Ambassadors worldwide. \n 
URL:https://www.sumairafoundation.org/event/hcp-south-africa-12/
LOCATION:Virtual: Global
CATEGORIES:Support Group
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260208T110000
DTEND;TZID=America/New_York:20260208T120000
DTSTAMP:20260403T182110
CREATED:20260128T114217Z
LAST-MODIFIED:20260128T114217Z
UID:21161-1770548400-1770552000@www.sumairafoundation.org
SUMMARY:TSF HCP Caregivers - Communication is Key
DESCRIPTION:The Caregivers Human Collective Project (HCP) is a groundbreaking support group hosted by The Sumaira Foundation\, created specifically for caregivers of individuals living with rare neuroimmune diseases like NMOSD and MOGAD. This first-of-its-kind session offers a safe\, inclusive space for family members\, partners\, siblings\, children\, and loved ones to connect\, share\, and be heard. Led by our dedicated Caregiver Ambassadors\, who bring their own lived experience and empathy to the conversation\, participants can expect heartfelt conversations\, mutual support\, and practical insights into the caregiving journey. Whether you’re navigating the emotional\, physical\, or logistical challenges of caregiving\, this group is designed to uplift and empower you through community\, compassion\, and connection.
URL:https://www.sumairafoundation.org/event/tsf-hcp-caregivers-communication-is-key/
LOCATION:Virtual: Global
CATEGORIES:Support Group
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