The Sumaira Foundation

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, 2025-11-24 20:00 - 21:00, 2025-12-22 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
