The Sumaira Foundation

TSF Research Update & Award Ceremony
2025-09-24 19:00 - 22:30 (Europe/Rome) | Casa Llotja de Mar, Barcelona, Spain
If you’re attending ECTRIMS in Barcelona, we invite you to attend TSF’s Research Update & Award Ceremony at Casa Llotja de Mar.

Join us for an evening with research updates, recognition of outstanding achievements in the field and networking with a community dedicated to pushing the boundaries of science and technology. During this time, we will be announcing the recipient of TSF’s 2025 Global Rare Trailblazer Award.
This in-person gathering promises to be a memorable occasion where key opinion leaders, researchers, patients and industry leaders come together to celebrate excellence in neurology.
100% of proceeds will be used to fund research through TSF’s Spark and Unicorn grants. To reserve your tickets, visit https://www.eventbrite.com/e/entradas-2025-tsf-research-update-award-ceremony-1364334644649

ECTRIMS Patient Community Day 2025
2025-09-26 15:00 - 18:00 (Europe/Madrid) | Online and Onsite at CCIB Barcelona International Convention Centre, Barcelona, Spain
Join us on September 26, 2025 for ECTRIMS Patient Community Day – an exclusive, free event designed for individuals living with MOGAD, MS, NMOSD and related neurological conditions.
Patient Community Day is an opportunity to learn about the latest research advancements directly impacting your ongoing care and treatment options. The programme will include engaging roundtable discussions led by international experts, insightful Q&A sessions, and a multilingual experience ensuring accessibility for all.
This event is FREE to attend. Pre-registration is required. It will be held in English, with live translations in 50+ languages!
Have a research question about your condition that you would like answered during the event? As part of the interactive nature of the event, we invite you to actively participate in our #ECTRIMS4me campaign. Your questions and concerns will shape the agenda, making this event a true reflection of community-driven support and advocacy. Submit your question: https://www.ectrimspatientcommunity.eu/ask-the-expert
Join us as we push the boundaries of knowledge and forge a stronger path toward collective support and well-being.

TSF's 5k for Rare Neuroimmune Disorders
2025-09-28 09:00 - 16:00 (America/New_York) | Weston Town Hall, 11 Town House Rd, Weston, 02493, United States
Join us on Sunday September 28th in Weston, Massachusetts to run, walk, socialize, and raise funds. (Registration/attendance comes with a free t-shirt).
This event is being organized by Terry Clark, TSF Ambassador of MA and NMOSD patient who says, “As many of you know, almost 3 years ago, in May of 2022, I was diagnoses with a rare autoimmune disease called NMO. This 5k has been something I’ve wanted to do for years now, so I’m excited to finally begin this annual race to raise awareness. Early detection of NMO improves quality of life!”
Proceeds from this event will be used to fund researcher rare neuroimmunological disorders. Thanks to grassroots efforts like this, we’ve been able to fund close to 1m in research since 2018. View our research portfolio here: https://www.sumairafoundation.org/tsf-funded-research/
Spread the word; the more, the merrier!

Yoga Para Todos. Yoga y Vida
2025-10-01 18:00 - 19:00 (America/Bogota) | Virtual: Colombia, Colombia
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.

TSF's Human Collective Project Meetings
2025-10-09 20:00 - 21:00 (America/New_York) | Virtual: United States, United States
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.

Zrozumienie MOGAD i znaczenia udziału pacjentów w badaniach klinicznych
2025-10-14 18:00 - 19:00 (Europe/Warsaw) | Virtual: Poland, Poland
Czy Ciebie lub kogoś bliskiego dotknęła plaga MOGAD?
Dołącz 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.
Uczestnicy na żywo będą mieli okazję zadać pytania ekspertom. Webinarium zostanie nagrane i udostępnione do odtworzenia na kanale TSF w serwisie YouTube.
Program ten jest możliwy dzięki wsparciu UCB.

Salute femminile e NMOSD/MOGAD: dialogo su gravidanza, allattamento e sessualità
2025-10-15 19:00 - 20:00 (Europe/Paris) | Virtual: Italy, Italy
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!

Data: 15 ottobre alle 19:00 CET
Relatrice: Dott.ssa Sara Carta, esperta in Neuroimmunologia presso l’Università di Verona
Temi: Gravidanza, Allattamento e Sessualità – aspetti cruciali per una gestione consapevole della salute.

Partecipando in diretta, avrete l’opportunità di:
– Porre domande in tempo reale alla Dott.ssa Carta
– Condividere esperienze e dubbi in uno *spazio sicuro e accogliente*, libero da pregiudizi
– Connettervi con altre persone della comunità NMOSD e MOGAD italiane

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.

Questo evento è reso possibile grazie al supporto di Alexion.

Iscriviti ora e unisciti a noi per un momento di condivisione e crescita! https://us02web.zoom.us/webinar/register/WN_I2EUzRCMR9Gdtm92DG6WOA

TSF Italia si impegna a promuovere la consapevolezza e il sostegno alle persone affette da malattie neuroimmunologiche rare.

Seattle Patient Day for Rare Neuroinflammatory Disorders
2025-10-18 11:00 - 17:00 (America/Los_Angeles) | University of Washington, 4295 Little Canoe Channel NE, Seattle, WA, 98195, United States
We’re coming to Seattle!
Are 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.
Join us for a day of education, community, and fun to:

Meet local patients, partners, care-partners and clinicians
Ask experts questions in real time about symptom management, treatments and therapies, co-morbidities and more
Learn about updates on the latest research and findings from local key opinion leaders

This 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!
—
AE stands for autoimmune encephalitis
MOGAD stands for myelin oligodendrocyte glycoprotein antibody-associated disorder
NMOSD stands for neuromyelitis optica spectrum disorder
SPS stands for stiff person syndrome

Human Collective Project | United Kingdom
2025-10-22 19:00 - 20:00 (Europe/London) | Virtual: United Kingdom, United Kingdom
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.

Human Collective Project | Mental Health Mondays
2025-10-27 20:00 - 21:00, 2025-12-29 20:00 - 21:00 (America/New_York) | Virtual: United States, United States
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.

Navigating NMOSD in Canada
2025-11-05 19:00 - 20:00 (America/New_York) | Virtual: Canada, Canada
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.
Join 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.
Attendees 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.
This program is made possible with support from Alexion and Amgen.

Toronto Patient Day for Rare Neuroinflammatory Disorders
2025-11-08 11:00 - 17:00 (America/New_York) | The Conference Centre at the OBA, 20 Toronto Street Toronto, ON, M5C 2B8, Canada
We’re coming to Toronto!
Are 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.
Join us for a day of education, community, and fun to:

Meet local patients, partners, care-partners and clinicians
Ask experts questions in real time about symptom management, treatments and therapies, co-morbidities and more
Learn about updates on the latest research and findings from local key opinion leaders

This 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.
Registration is free and lunch will be served. We can’t wait to see you in Toronto!
The Sumaira Foundation team

—
AE stands for autoimmune encephalitis
MG stands for myasthenia gravis
MOGAD stands for myelin oligodendrocyte glycoprotein antibody-associated disorder
NMOSD stands for neuromyelitis optica spectrum disorder

Human Collective Project – India Online Meeting
2025-11-09 20:00 - 21:00 (Asia/Kolkata) | Virtual: India, India
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.
The 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.

Κατανόηση της MOGAD και της σημασίας της συμμετοχής των ασθενών σε κλινικές δοκιμές
2025-11-10 18:00 - 19:00 (Europe/Athens) | Virtual: Global
Εσείς ή κάποιος που αγαπάτε επηρεάζεστε από το MOGAD;
Σας προσκαλούμε να συμμετάσχετε στο επερχόμενο πρόγραμμά μας αφιερωμένο στην MOGAD τη Δευτέρα 10 Νοεμβρίου στις 6 μ.μ. EET.
Θα συμμετάσχουν ο Καθηγητής Νικόλας Γρηγοριάδης και η Δρ. Έλμα Ευαγγελοπούλου, οι οποίοι θα συζητήσουν τα συμπτώματα, τις θεραπείες και τις κλινικές δοκιμές της MOGAD.
Οι 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.
Αυτό το πρόγραμμα καθίσταται δυνατό με την υποστήριξη του UCB.

Human Collective Project | Caregivers
2025-11-16 11:00 - 12:00 (America/New_York) | Virtual: Global
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.

Het belang van deelname van mensen met MOGAD aan onderzoek, met als doel de ziekte beter te begrijpen en behandelen
2025-11-18 20:00 - 21:00 (Europe/Amsterdam) | Virtual: Amsterdam, Netherlands
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.
We 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.
Aanwezigen die live deelnemen, kunnen de experts in realtime vragen stellen.
Dit webinar wordt opgenomen en beschikbaar gesteld voor herhaling op het YouTube-kanaal van TSF.
Dit programma is mogelijk gemaakt met steun van UCB.

3° Giornata dedicata da malattie neuroimmunologiche rare - Roma
2025-11-22 12:30 - 19:30 (Europe/Rome) | Nazionale Spazio Eventi (Roma), Via Palermo, 10, Roma, 00184, Italy
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.
In 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.

Questo evento a libera iscrizione vi permetterà di:

Incontrare pazienti italiani , i loro caregivers ed i clinici esperti di queste patologie
Porre domande agli esperti in diretta relative alla gestione dei sintomi, le terapie, le comorbidità e molto altro
Aggiornarvi in merito alle ultime ricerche scientifiche con l’aiuto di medici esperti italiani
Fare rete e instaurare connessioni con la comunità locale

L’evento è gratuito e il pranzo sarà offerto da noi.

3ème week-end Patients et Aidants NMOSD & MOGAD - Lyon
2025-11-29 13:00 - 2025-11-30 13:00 (Europe/Paris) | Mama Shelter Lyon, 13 Rue Domer, Lyon, 69007, France
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 !
L’évènement, complétement gratuit, aura lieu au Mama Shelter de Lyon, rue Domer, les 29 et 30 novembre 2025.
Nous sommes ravis d’être accompagnés par les experts du MIRCEM et de nombreux autres intervenants qui nous rejoignent pour ces deux journées d’information.
Venez 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.
Venez mettre en lumière la NMOSD et la MOGAD avec TSF France.
À bientôt!
L’équipe TSF France (Anass, Bérengère, Claire, Elodie, Emma, Fatiha, Nassima, Natasha, Nelly et Selma)
Envoyez vos questions à: Berengere@sumairafoundation.org ou guillaume@sumairafoundation.org
Accès par le métro Station Jean MACE – Parking public à proximité

Every Relapse Matters: The Evolving NMOSD & MOGAD Treatment Landscape in Canada
2025-12-11 19:30 - 20:30 (America/New_York) | Virtual: Canada, Canada
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.
We 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.
Participants 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.
This program is made possible with support from Alexion and Amgen.

TSF HCP Caregivers
2025-12-14 11:00 - 12:00 (America/New_York) | Virtual: Global

Navigating Insurance Barriers as a Rare Disease Patient
2025-12-16 19:00 - 20:00 (America/New_York) | Virtual: United States, United States
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.
Join 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.

What you’ll learn:

The basics of prior authorization
How to navigate health insurance appeals
How insurance rules vary by state and by plan type, and why state insurance department resources matter.
Key tools and resources for patients

Who should attend:

Individuals living with a rare disease and their caregivers
Family members interested in advocacy
Patient advocacy professionals, case managers, and support group leaders
Healthcare professionals who support rare disease patients

Grupo de Apoyo + Charla Enfocado en Salud Mental
2025-12-16 19:00 - 20:00 (America/Bogota) | Virtual: Colombia, Colombia
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.

MOGAD Hakkında Güncel Gelişmeler ve Tedaviler
2025-12-23 16:00 - 17:00 (Europe/Istanbul) | virtual: Turkey, Turkey
Siz veya sevdiğiniz biri MOG antikor hastalığından etkileniyor mu?
23 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.
Canlı olarak katılan katılımcılar, uzmanlara gerçek zamanlı olarak soru sorma fırsatına sahip olacaklar. Bu web semineri kaydedilecek ve TSF’nin YouTube kanalında tekrar izlenebilecek.
Bu program, UCB’nin desteğiyle mümkün olmuştur.

TSF HCP Caregivers: Becoming a Resilient Caregiver
2026-01-11 11:00 - 12:00 (America/New_York) | Virtual: Global

TSF's Human Collective Project Meetings
2026-01-15 20:00 - 21:00 (America/New_York) | Virtual: Global

Grupo de apoyo enfocado en Cuidadores
2026-01-19 00:00 - 17:00 (America/Bogota) | Virtual: Colombia, Colombia
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.

Día del Paciente para Trastornos Neuroinflamatorios Raros - Puerto Rico
2026-01-24 10:00 - 17:00 (America/New_York) | Hyatt Centric San Juan – Isla Verde, 8020 José M. Tartak Ave, Carolina, Puerto Rico, 00979, United States Minor Outlying Islands
¡TSF llega a Puerto Rico el sábado 24 de enero 2026!
Invitamos 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:
¡Esperamos verlos allí!

Encefalitis autoinmune (EA)
MOGAD
Neurosarcoidosis
NMOSD
Síndrome de la persona rígida

Únase a nosotros para un día de aprendizaje, comunidad y diversión:

Podran conocer a pacientes, cuidadores y profesionales de la salud de todo Puerto Rico.
Haga preguntas a expertos en tiempo real sobre el manejo de los síntomas, tratamientos y terapias, comorbilidades y mucho más.
Infórmese sobre las últimas investigaciones y descubrimientos de la mano de expertos.

Este 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.
¡Tenemos muchas ganas de verlos en Puerto Rico!
La Fundación Sumaira

La terapia cannabinoide: l'importanza dell'informazione e del controllo medico
2026-01-27 20:30 - 21:30 (Europe/Rome) | Virtual: Italy, Italy
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.
Sarà 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.
Durante il webinar, Elisabetta condividerà la sua esperienza personale e fornirà informazioni fondamentali per i pazienti, tra cui:

la differenza tra uso ricreativo e uso terapeutico basato su evidenze scientifiche
i farmaci a base di cannabis prescrivibili secondo il Decreto Lorenzin (Legge 119/2017)
la copertura delle prescrizioni da parte del Servizio Sanitario Nazionale
l’importanza della supervisione medica e le interazioni con altre sostanze
i possibili effetti collaterali della terapia con cannabinoidi
l’importanza della formazione dei medici

Partecipa a questo approfondimento: i partecipanti in diretta potranno porre domande a Elisabetta in tempo reale. Il webinar sarà registrato e reso disponibile in replay.
Questo programma è reso possibile grazie al supporto di Amgen e Alexion.
