The Sumaira Foundation

Per orientarsi: cognizione e sviluppo in pazienti pediatrici con MOGAD e NMOSD
2026-04-29 20:00 - 21:00 (Europe/Rome) | Virtual: Italy, Italy
Il tuo bambino ha ricevuto una diagnosi di NMOSD o MOGAD? Ti stai chiedendo come la diagnosi potrebbe influire sul suo sviluppo cognitivo?
Unisciti a noi martedì 29 aprile alle ore 20:00 CET per un webinar speciale con il Dott. Alberto Cossu, neuropsichiatra infantile presso l’Azienda Ospedaliera Universitaria Integrata di Verona, che approfondirà il rapporto tra cognizione e malattie neuroimmuni rare nei bambini. https://us02web.zoom.us/webinar/register/WN_Q8_tN9ruSSCsezuPnDiixQ
Il Dott. Cossu condividerà la sua esperienza e sarà disponibile a rispondere alle vostre domande in tempo reale durante la sessione dal vivo. Il webinar sarà moderato da Viviana e Alice, entrambe mamme di bambini con MOGAD.
Non perdete questa opportunità di confrontarvi con un esperto e di entrare in contatto con una comunità che comprende il vostro percorso.
Questo programma è reso possibile grazie al supporto di Amgen e Alexion

HCP South Africa
2026-04-21 11:00 - 12:00 (Africa/Johannesburg) | Virtual: Global
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.

Human Collective Project | Mental Health Mondays
2026-01-26 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.

TSF HCP Caregivers - Coping with Caregiving Emotions
2026-04-12 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.

TSF's Human Collective Project Meetings
2026-02-12 20:00 - 21:00, 2026-01-15 20:00 - 21:00 (America/New_York) | Virtual: Global
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.

Comprendere l’anticorpo AQP4 nella NMOSD
2026-04-02 18:00 - 19:00 (Europe/Rome) | Virtual: Italy, Italy
L’AQP4 (Aquaporina-4) è una proteina presente nel cervello, nel midollo spinale e nei nervi ottici che aiuta a regolare il movimento dell’acqua dentro e fuori dalle cellule. Nella NMOSD, il sistema immunitario attacca per errore l’AQP4. Questo attacco può causare infiammazione nel midollo spinale e nei nervi ottici, portando a sintomi come alterazioni della vista, debolezza o intorpidimento.
Unisciti a noi giovedì 2 aprile alle 18:00 (CET) per una presentazione e discussione approfondita sull’AQP4, guidata dalla Dott.ssa Sara Mariotto, neuroimmunologa presso l’Università di Verona.
I partecipanti collegati in diretta avranno l’opportunità di porre domande alla Dott.ssa Mariotto in tempo reale. È richiesta la registrazione. https://us02web.zoom.us/webinar/register/WN_CDm8SEe2Rmea8yjKnZqVGg
Questo programma è reso possibile grazie al supporto di Amgen e Alexion.

Real-World Efficacy & Safety of NMOSD Treatments
2026-03-26 19:00 - 20:00 (America/New_York) | Virtual: United States, United States
A recent study, “Real‑World Efficacy and Safety of Neuromyelitis Optica Spectrum Disorder Disease‑Modifying Treatments,” showed that in routine practice, approved NMOSD therapies reduce relapse rates and offer better safety than older treatments, reinforcing their value for patients. (Read the article here: https://pubmed.ncbi.nlm.nih.gov/41494145/)
To mark NMO Awareness Month 2026, we’ll be joined by Dr. Shamik Bhattacharyya, a lead author of this study, who will discuss the benefits of FDA-approved NMOSD therapies versus non-approved first-line treatments.
Join us on Thursday, March 26th at 4 PM PST / 7 PM EST. Attendees joining live will have the opportunity to participate in the live Q&A.
The webinar will be recorded and available for replay. Registration is required.
This educational program is made possible with support from Amgen and Alexion.

Terapie per la NMOSD in Italia
2026-03-24 13:00 - 14:00 (America/New_York) | Virtual: Italy, Italy
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.
Unitevi 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
Il webinar sarà registrato e reso disponibile per la visione successiva.
Questo programma educativo è stato realizzato con il supporto di Amgen.

TSF HCP Caregivers - Caregiver Burnout
2026-03-15 11:00 - 12:00 (America/New_York) | Virtual: Global

TSF-Patiententag für seltene neuroimmunologische Erkrankungen - Berlin
2026-03-07 10:00 - 17:00 (Europe/Berlin) | Charité Campus Virchow-Klinikum, Augustenburger Pl. 1, Berlin, 13353, Germany
Wir kommen nach Berlin!
Sind Sie oder Ihre Angehörigen von einer der folgenden Erkrankungen betroffen: Autoimmunenzephalitis, Myasthenia gravis, MOGAD oder Neuromyelitis-optica-Spektrum-Erkrankung?
Wir laden Patienten, Angehörige und medizinisches Fachpersonal aus der DACH-Region herzlich zu einer Sonderveranstaltung für Patienten und Angehörige am Samstag, den 7. März, in der Charité Berlin ein (Charité Campus Virchow-Klinikum Augustenburger Pl. 113353 Berlin)
Nehmen Sie teil an einem Tag voller Bildung, Gemeinschaft und Austausch, um:

lokale Patienten, Partner, Pflegekräfte und medizinisches Fachpersonal zu treffen
Experten live Fragen zu Symptommanagement, Behandlungsmöglichkeiten, Therapien, Begleiterkrankungenund vielem mehr zu stellen
die neuesten Forschungsergebnisse und Erkenntnisse von führenden Meinungsbildnern aus der Region zu erfahren

Diese Veranstaltung wird in Zusammenarbeit mit dem NEMOS-Netzwerk organisiert. Die Teilnahme ist kostenlos, und es wird ein Mittagessen angeboten. https://tinyurl.com/TSFBerlin

Meet the Author | Jayne Mattingly, "This is Body Grief"
2026-02-26 19:00 - 20:00 (America/New_York)
In honor of Rare Disease Day 2026, join us for a special Meet the Author fireside chat on February 26th at 7:00 PM EST.
We’re honored to welcome Jayne Mattingly, author of “This is Body Grief”, in conversation with Taylor Ann Macey, NMOSD patient and TSF Ambassador. Their discussion will explore chronic illness, advocacy and Jayne’s powerful book – an intimate, lyrical reflection on living in a body shaped by illness, grief, resilience and care.
A thoughtful, honest conversation you won’t want to miss. Register here: https://us02web.zoom.us/webinar/register/WN_DJvY5tYkTK2TikJiGU2Kag
To order Jayne’s book, visit https://www.amazon.com/This-Body-Grief-Making-Living/dp/0593656792

HCP Grupo de apoyo Pacientes
2026-02-24 19:00 - 20:00 (America/Bogota) | Virtual: Colombia, Colombia
Un espacio en español para que pacientes de enfermedades neuroinmunes raras como NMOSD, MOGAD, etc expresen sus emociones.

TSF's Honolulu Patient Day for Rare Neuroinflammatory Disorders
2026-02-21 11:00 - 17:00 (Pacific/Honolulu) | hawaii convention center, 1801 Kalākaua Ave, Honolulu, HI, 96815, United States
Are you or your loved one impacted by MG*, MOGAD* or NMOSD*?
TSF is inviting patients and caregivers impacted by rare neuroinflammatory disorders from all over Hawaii to join us in Honolulu on Saturday, February 21st in Honolulu!
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, comorbidities 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. Natalia Gonzalez Caldito (Hawaii Neuroscience) and Dr. Alexandra Galati (The Queen’s Health Systems) and in partnership with the MG Holistic Society. Registration is free and lunch will be served. We can’t wait to see you in Honolulu!

—

MG stands for myasthenia gravisMOGAD stands for myelin oligodendrocyte glycoprotein antibody-associated disorderNMOSD stands for neuromyelitis optica spectrum disorder

Generalidades de Encefalitis Autoinmune
2026-02-21 10:00 - 11:00 (America/Mexico_City) | Virtual: Mexico
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.
Nicole 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.
Para registrarte, visita: https://us02web.zoom.us/webinar/register/WN_xFgbNRGVTFitJ87rp1M6bQ

Human Collective Project - UK
2026-02-13 19:00 - 20:00 (Europe/London) | Virtual: United Kingdom, United Kingdom

TSF HCP Caregivers - Communication is Key
2026-02-08 11:00 - 12:00 (America/New_York) | Virtual: Global

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.

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

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.

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