🇫🇷 Découvrez « NMO Bonjour », notre court-métrage avec Bérengère. Mère vivant avec la #NMOSD depuis plus de 20 ans, elle partage avec sa fille Emma une histoire de résilience et d’amour. 🎥 Finaliste du Festival du film de WHO 2023 youtu.be/S61aOuBWf4s?...

March is #NMO Awareness Month! 🩷🧡💛 Did you know ~95% of rare diseases lack approved therapies? Fortunately, #NMOSD is among the ~5% that have treatment options, with 4 approved therapies today. Learn more: www.sumairafoundation.org/awareness/th...

On March 8 we celebrate International Women’s Day! Did you know 🦄 Autoimmune diseases affect women 2:1 🦄 Rare diseases are 10x more likely in women 🦄 #MOGAD shows no female predominance 🦄 Women are 9x more likely to have #NMOSD Grateful for the women in our community. 🩷🧡💛

On this #RareDiseaseDay I've reflected on how far I've come since my NMOSD diagnosis nearly 3 years ago - shoutout to my support network of family and friends, and finding new purpose by working with the @thesumairafdn.bsky.social 🩷

March is #NMO Awareness Month! #NMOSD (also called Devic’s disease) is a rare neuroimmune condition where the immune system attacks the central nervous system, often targeting AQP4. Learn about NMOSD, research, explore resources and read patient stories: www.sumairafoundation.org

🇩🇪 Begleiten Sie uns am 7. März in Berlin, um von Expert:innen mehr über #MG, #MOGAD und #NMOSD zu erfahren. Die Teilnahme an der Veranstaltung ist kostenlos, und es wird ein Mittagessen serviert! Zur Anmeldung besuchen Sie tinyurl.com/TSFBerlin (Anmeldung erforderlich).

🧠🇨🇦 After battling autoimmune encephalitis / #AE, Alanna transformed her journey into advocacy. From patient to research partner - her story inspires change. Read more: www.sumairafoundation.org/alannas-ae-s...

February is Black History Month 💛❤️💚🖤 We honor Rev. Jesse Jackson, civil rights leader and recipient of the Presidential Medal of Freedom (2000). His journey with progressive supranuclear palsy (PSP) also shed light on this rare neurodegenerative disease. 1941–2026

🇵🇷 El 24 de enero de 2026, TSF celebró en Puerto Rico su Día del Paciente junto al Centro de EM de PR, reuniendo a +80 pacientes, cuidadores y profesionales impactados por #EA, #MOGAD, #NMOSD, neurosarcoidosis y #SPS. www.sumairafoundation.org/resumen-del-...

Current evidence and knowledge gaps in family planning and pregnancy in #myastheniagravis, #NMOSD, and #MOGAD www.thelancet.com/journals/lan...

When rare disease besties link up: Honolulu edition 🏝️🤙🏾🩷 Happy #RareDisease Week! 🦓

🧠❤️February 22nd is World Encephalitis Day, a day observed every year to raise global awareness about encephalitis, a serious condition involving inflammation of the brain. #RED4WED

On #NationalCaregiversDay (Feb 20), we honor the strength, compassion & resilience of caregivers in our rare neuroimmune community 💜 To every parent, partner, sibling & friend who shows up through it all - we see you, we thank you, we celebrate you.

In honor of World Encephalitis Day (Feb 22), TSF shares an exclusive 2022 interview with Susannah Cahalan. She discusses her journey with anti‑NMDA receptor encephalitis, her NYT bestseller Brain on Fire, advocacy, and Hollywood’s take on her story. 🎥 youtu.be/kWTyY1gxZho?...

🏆 The 2025 #NobelPrize in Medicine was awarded to Mary E. Brunkow, Fred Ramsdell & Shimon Sakaguchi for discovering how the immune system avoids attacking the body itself. Official summary: nobelprize.org/prizes/medicine/2025/summary/

🤍 Caregivers are the bridge of hope for those living with #rarediseases and they deserve support too. “Caregiver Conversations,” led by TSF Ambassadors, offers global support, education & connection for rare neuroimmune caregivers. 🔗 sumairafoundation.org/caregiver-conversations/

February is #BlackHistoryMonth 💛❤️💚🖤 #NMOSD disproportionately affects Black Americans: ~13/100k prevalence vs ~5/100k in White Americans, ~28% of U.S. NMOSD patients are Black, with higher incidence and worse pain & cognitive outcomes. Share your experiences.

💡#NMOSD phenotype but AQP4–/MOG–? 💡 New international study in N2 shows anti-CD20 therapy cut attack risk by 98% vs no treatment, with >85% relapse-free, supporting anti-CD20 as first-line. www.neurology.org/doi/10.1212/...

T-18 days until our Honolulu Patient Day for #MG, #MOGAD and #NMOSD! Meet our panelists🦄🧠 Join us on 2/21 for a day of education and community. This is a free in-person event and lunch will be provided. www.tinyurl.com/TSFHawaii 🌺 A hui hou

🇯🇵 TSF is excited to host the Gala Dinner for European Charcot Foundation's 2nd Update on #NMOSD & #MOGAD meeting in Tokyo! Join us for an evening of networking with experts, clinicians, researchers & key stakeholders. To register for the workshop, visit amarys-jtb.jp/ecfupdate2026

🇨🇦 GREAT NEWS! As of February 1, 2026, Ultomiris is now listed for the treatment of patients with #NMOSD in Alberta.

In honor of #RareDisease Day 2026, join us for a special "Meet the Author" fireside chat with Jayne Mattingly, author of “This is Body Grief” on February 26th at 7 PM EST. A thoughtful, honest conversation you won’t want to miss. us02web.zoom.us/webinar/regi...

We’re excited to partner with MG Holistic Society for our Honolulu Patient Day on February 21st! Are you or your loved one impacted by #myastheniagravis (#MG), #MOGAD or #NMOSD? Join us for a day of education and community 🌺 www.tinyurl.com/TSFHawaii

🇰🇷🦄 In a study that reviewed records of 100 children with #MOGAD in @SeoulNatlUni Children's Hospital, - 43 had at least 1 relapse - Average age at first episode -> 7 years - Optic neuritis/brain inflammation most common initial presentation Learn more: sumairafoundation.org/summaries/ph...

Earlier Plasma Exchange Could Yield Better Outcomes in #MOGAD www.aao.org/education/ed...

🇵🇦 Anayansi, de Panamá, comparte su historia viviendo con enfermedades crónicas y raras desde joven. Más que diagnósticos, es un relato de resiliencia, adaptación y dignidad, enfocado hoy en la estabilidad, la autonomía y la calidad de vida. www.sumairafoundation.org/la-historia-...

Are you or your loved one impacted by #AE, #CNSvasculitis, #MG, #MOGAD, #neurosarcoidosis, #NMOSD or #SPS? TSF is inviting patients & caregivers impacted by rare neuroinflammatory disorders from all over Hawaii to join us in Honolulu on Saturday, February 21st! www.eventbrite.com/e/tsfs-honol...

🇵🇷 Conoce a los expertos en nuestro Día del Paciente para Trastornos Neuroinflamatorios Raros - Puerto Rico el sábado, 24 de enero. El evento es gratuito e incluye almuerzo. Se requiere registro: www.tinyurl.com/TSFPuertoRico

🇨🇦 GREAT NEWS! As of January 1, 2026, Ultomiris is now listed for the treatment of patients with #NMOSD in Saskatchewan. Click to read the public bulletin for more information: www.sumairafoundation.org/wp-content/u...

argenx Announces FDA Acceptance of Supplemental Biologics License Application with Priority Review for VYVGART in AChR-Ab Seronegative gMG argenx.com/news/2026/pr...

Marissa joins The Sumaira Foundation as Ambassador for Ontario 🇨🇦. An #NMOSD patient, she’s committed to closing gaps in support and resources, raising awareness, educating communities and emergency responders, and amplifying patient voices across Eastern Ontario. Welcome, Marissa!

Real-World Efficacy and Safety of #NMOSD Disease-Modifying Treatments published in @GreenJournal www.neurology.org/doi/pdfdirec...

¡TSF llega a Puerto Rico! 🇵🇷 📅 Sábado, 24 de enero de 2026 Invitamos a pacientes, cuidadores y profesionales a un día gratuito sobre trastornos neuroinflamatorios raros (EA, CNS vasculitis, MOGAD, neurosarcoidosis, NMOSD y SPS). 🔗 www.eventbrite.com/e/dia-del-pa...

🇨🇦 TSF Canada was pleased to be joined by Dr. Alexander Muccilli who presented the treatment landscape for #NMOSD & #MOGAD in Canada. She outlined the current and emerging treatments for NMOSD & MOGAD and guidance on navigating care pathways in Canada. youtu.be/VbU6VxpM5WQ

Join the OBSERVE-NMO Study to help researchers learn how UPLIZNA® (inebilizumab-cdon) works in real-world care for NMOSD. ✔ No extra treatments ✔ Secure record collection ✔ $250 e-gift card + free access to your own consolidated health timeline 👉https://go.pic.nc/d7w #NMOSD #marketresearch

Today marks a major milestone for the #gMG community in the US: the @US_FDA has approved Uplizna for adults with generalized #myastheniagravis. This is the first and only CD19-targeted B Cell therapy approved in anti-AChR and anti-MuSK Ab+ gMG. www.prnewswire.com/news-release...

Desde niña, el arte fue su refugio. Tras perder a su padre, enfrentar ansiedad, depresión y un grave accidente, llegó finalmente el diagnóstico: #NMOSD. Hoy, con 20 años, ha vivido parálisis y pérdida de visión, pero también descubrió una fuerza inmensa www.sumairafoundation.org/la-historia-...

🇨🇦 Join us on December 11th at 7:30 PM EST for an educational webinar on evolving treatment options for AQP4+/- #NMOSD & #MOGAD in Canada. Featuring Dr. Alexandra Muccilli on current/emerging therapies + navigating care pathways. 🔗 Register: us02web.zoom.us/webinar/regi...

"The Current State of Diagnostics for Neuroimmunological Disorders in Africa" Important & insightful paper published in the Journal of Central Nervous System Disease by Malya Sahu, Mashina Chomba, Fiifi Duodu, Monica M. Diaz, Dilraj Sokhi & Deanna Saylor www.sumairafoundation.org/wp-content/u...

🦄🇨🇦🌺 Beautiful artwork created by the amazing kids at TSF’s Toronto Patient Day on November 8th!

🌐 Our latest research infographic spotlights a comprehensive review of about 4,700 #MOGAD patients globally. Read the summary: www.sumairafoundation.org/summaries/mo...

🇩🇪 In der neuen Folge des Alexion-Patienten-Podcasts spricht Hans-Jörg über seine seltene Diagnose mit fast 60 – und wie sie sein Leben veränderte. Als TSF-Botschafter teilt er offen seine Erfahrungen, Herausforderungen & Mutmacher-Momente. Jetzt reinhören www.youtube.com/watch?v=c6C7...

🇦🇷 ¡Bienvenido el Dr. Edgar Carnero Contentti de Argentina al Equipo de Embajadores de TSF! Neurólogo especializado en #NMOSD y #MOGAD, busca promover educación, conciencia e investigación en Latinoamérica. Cree que ciencia + comunidad pueden transformar vidas. 💙

Congratulations Nakeshia Nickerson, TSF Ambassador of Ohio & #MOGAD warrior, who has been elected Mayor of the Village of Woodmere, Ohio! Nakeshia continues to inspire us all, proving that MOGAD will never limit, define or consume her. 🩷🧡💛

🇨🇦 T-5 days until Toronto Patient Day for Rare Neuroinflammatory Disorders! Meet our featured patient panelists. If you’re impacted by #AE, #MG, #MOGAD or #NMOSD and are from Canada, join us for a day of education, connection and impact! To register, visit tinyurl.com/TSFToronto

Nos alegra dar la bienvenida a la Dra. Eugenia Balbuena, nueva Embajadora Clínica de @TheSumairaFdn en Argentina 🇦🇷 Pionera en neuroinmunología y defensora de pacientes con #NMOSD, #MOGAD y #EM, se une para generar conciencia y visibilidad en la región.

🇮🇹 Parliamo di salute femminile e di vita con #NMOSD e #MOGAD! Silvia e Nour raccontano le loro esperienze con MOGAD e gravidanza, mentre la Dott.ssa Sara Carta @CartaSra approfondisce salute, allattamento e sessualità. Guarda il webinar 👉 youtu.be/BpwGQr1iAVc

On Sept 28, we hosted our 1st 5K for Rare Neuroimmune Disorders in Weston, MA, uniting 150+ participants and raising $20K for research. Organized by #NMOSD patient/advocate, Terry & her son Patrick, the event inspired awareness and support. Read more: www.sumairafoundation.org/event-recap-...

You’re invited to join PREVAIL, a live, virtual event featuring Rosemarie Walch, DO and Christina, an #NMOSD patient, on November 5 who will share insights into disease management the importance of advocating for yourself & conducting your own research. bit.ly/47xmtwf

On September 24th, we welcomed 165 guests from all over the world to TSF’s Research Update & Award Ceremony at Casa Llotja de Mar in Barcelona 🇪🇸 Read the recap, view the photo gallery and relive the magical moments of our event! www.sumairafoundation.org/event-recap-...