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

Viviendo con NMOSD en América Latina: Desafíos y barreras en Argentina, Colombia y México
2026-04-29 20:00 - 21:00 (America/New_York) | Virtual: Colombia, Colombia
¿Tú o un ser querido viven con NMOSD en Latinoamérica? Únete al equipo de LatAm de The Sumaira Foundation para un webinar especial dedicado a explorar los desafíos únicos que enfrentan los pacientes con NMOSD en Argentina, Colombia y México.
Este webinar en español reunirá a destacados neurólogos de los tres países para analizar la realidad del diagnóstico de NMOSD en la región, incluyendo las tasas de incidencia en comparación con los datos globales, el proceso diagnóstico y las barreras que con demasiada frecuencia retrasan un diagnóstico oportuno.
Ponentes Destacados:

Dra. Maria Eugenia Balbuena (Argentina)
Dr. Luis Alfonso Zarco (Colombia)
Dr. Jose Flores-Rivera (México)

También escucharás un poderoso testimonio de primera mano de una Embajadora de NMOSD de TSF en México, quien compartirá su experiencia personal en el camino hacia el diagnóstico. El webinar cerrará con una sesión abierta de preguntas y respuestas de 25 minutos, brindando a los asistentes la oportunidad de hacer preguntas a nuestro panel de expertos en tiempo real.
Fecha: Martes, 29 de abril de 2025 (90 minutos)
Horarios Locales:

🇲🇽 México: 7:00 PM CST
🇨🇴 Colombia: 8:00 PM COT
🇦🇷 Argentina: 10:00 PM ART

https://us02web.zoom.us/webinar/register/WN_ODczM1smTO2YdIBfXGZ7iA
Ya seas paciente, cuidador o profesional de la salud, este webinar es una oportunidad para obtener información valiosa sobre el estado de la atención del NMOSD en Latinoamérica y para conectar con una comunidad que trabaja para derribar barreras y mejorar los resultados para todos.

TSF HCP Caregiver's - Dealing with Depression
2026-05-10 12:00 - 13:00 (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
2026-05-14 20:00 - 21:00 (America/New_York)
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.

Managing Chronic Pain
2026-05-18 15:30 - 16:30 (America/New_York) | Virtual: Global
Living with chronic pain can feel overwhelming, but you don’t have to face it alone. You’re invited to a webinar focused on navigating chronic pain with clarity, support, and hope.
On Monday, May 18th at 3:30 PM EST, we’ll be joined by Dr. Anastasia Vishnevetsky, neuroimmunologist at Mass General Brigham/Harvard Medical School, who will share practical strategies and insights to help individuals better understand and manage chronic pain in their daily lives. This session is designed with patients and caregivers in mind—offering approachable, real-world guidance in a supportive and inclusive space.
Together, we’ll explore ways to improve quality of life, build resilience, and feel more empowered in your care journey. Attendees who join live will have the opportunity to ask questions and engage directly during the session.
We hope you’ll join us for this meaningful conversation and take a step toward feeling more supported and informed.
This program is made possible with support from Amgen.

HCP presents Mental Health Mondays
2026-05-25 20:00 - 21:00, 2026-06-22 20:00 - 21:00, 2026-07-27 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.

When to Call Your Neurologist & What to Say: Advice from a Neurologist
2026-05-28 21:00 - 22:00 (America/New_York) | Virtual: Global
Not sure your neurologist needs to hear from you? Or what to say when you reach out? You’re not alone.
Join us on Thursday, May 28 at 6 PM PT / 9 PM ET for a practical, patient-friendly webinar with Dr. Stacey Clardy, a leading neurologist, who will walk through when it’s important to contact your care team, how to clearly communicate your symptoms, and how to advocate for the care you deserve.
Whether you’re newly diagnosed or have been managing your condition for years, this session will offer guidance to help you feel more confident navigating conversations with your neurologist.
Those who attend live will have the opportunity to ask questions.
Made possible with support from Amgen.

The Human Collective Project - Africa
2026-06-03 12:00 - 13:00 (Africa/Johannesburg) | Virtual: Global
The Human Collective Project (HCP) is TSF’s support group meeting offered to anyone who has been affected/impacted by rare neuroimmune diseases. The program came into existence during the height of the COVID-19 pandemic in 2020, when most NMOSD/MOGAD patients 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 202, 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.

Salute Mentale e Malattie Rare: Strategie Per il Benessere Quotidiano
2026-06-03 18:00 - 19:00 (Europe/Rome) | Virtual: Italy, Italy
Unisciti a noi il 3 giugno alle ore 18:00 CET per un webinar dedicato al tema ‘Salute Mentale e Malattie Rare: Strategie per il Benessere Quotidiano’, con la partecipazione della Dott.ssa Emanuela Stoppele dell’Università di Verona. https://us02web.zoom.us/webinar/register/WN_HiLsvF5DR66ArBAK3WkDPw
Vivere con una malattia rara può avere un impatto profondo sulla vita quotidiana — dal punto di vista emotivo, fisico e sociale — sia per i pazienti che per i caregiver. Durante questo incontro, la Dott.ssa Stoppele approfondirà il legame tra salute mentale e malattia cronica, offrendo strategie pratiche per rafforzare la resilienza emotiva, gestire lo stress, migliorare la comunicazione e promuovere il benessere generale.
Pensato per pazienti, familiari e caregiver coinvolti nelle malattie neuroimmuni rare e correlate, il webinar offrirà uno spazio di confronto e supporto per comprendere meglio le sfide psicologiche legate a queste condizioni complesse e l’importanza di un approccio di cura globale e integrato.
L’evento è aperto a pazienti, caregiver, professionisti sanitari e sostenitori della comunità delle malattie rare.
Questo programma è stato reso possibile grazie al supporto di Amgen e Alexion.

Risonanza magnetica e NMOSD: quando serve, cosa può mostrare e perché è importante
2026-06-09 19:00 - 20:00 (Europe/Rome) | Virtual: Italy, Italy
Unisciti a noi per un’importante discussione, “Risonanza magnetica e NMOSD: quando è necessaria, cosa può mostrare e perché è importante”, con la partecipazione della Dott.ssa Rosanna Cortese, neurologa e ricercatrice, il 9 giugno alle ore 19:00 CET. https://us02web.zoom.us/webinar/register/WN_hBD6r4NWSP-8e6dLtPq2vA
La risonanza magnetica (MRI) svolge un ruolo fondamentale nella diagnosi e nel monitoraggio dell’NMOSD, ma molti pazienti e caregiver hanno ancora domande su quando sia necessaria, cosa osservano i medici e in che modo le immagini influenzino le decisioni terapeutiche. In questo webinar, la Dott.ssa Cortese spiegherà questi importanti argomenti in modo chiaro, accessibile e facile da comprendere per pazienti, caregiver e famiglie.
Gli argomenti includeranno:

Quando viene utilizzata la risonanza magnetica nell’NMOSD
Cosa possono mostrare le scansioni MRI del cervello, dei nervi ottici e del midollo spinale
Come i risultati della MRI aiutano a guidare diagnosi e trattamento
Domande frequenti e falsi miti sulla diagnostica per immagini nell’NMOSD

I partecipanti collegati in diretta avranno l’opportunità di porre domande durante una sessione interattiva di domande e risposte.
Che tu abbia ricevuto una diagnosi da poco, conviva con l’NMOSD da anni o stia supportando una persona cara, questo webinar ha l’obiettivo di offrire alla comunità maggiore conoscenza e chiarezza su un aspetto importante della cura.
Questo programma è stato reso possibile grazie al supporto di Amgen e Alexion.

TSF's Human Collective Project Meetings
2026-06-11 20:00 - 21:00, 2026-07-09 20:00 - 21:00, 2026-08-13 20:00 - 21:00, 2026-09-10 20:00 - 21:00, 2026-10-08 20:00 - 21:00, 2026-11-12 20:00 - 21:00 (America/New_York) | Virtual: United States, United States

Montreal Patient Day for Rare Neuroinflammatory & Related Disorders
2026-06-13 11:00 - 18:00 (America/New_York) | Plaza Centre-Ville, 777 Blvd Robert Bourassa, Montreal, Quebec, H3C3Z7, Canada
TSF is inviting patients and caregivers impacted by rare neuroinflammatory & related disorders from Montreal and the province of Quebec!
We’re coming to Montreal!
Are you or your loved one impacted by: CIDP*, IgG4-RD*, MG*, MOGAD* or NMOSD*? You’re invited to our event on Saturday, June 13th.
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 is a bilingual event. The full day will be available in English, with live translation services for French speakers. In the afternoon, select panels and discussions will be held in French with French-speaking clinicians and speakers. All attendees—whether English- or French-speaking—will be able to fully participate and enjoy the day.
This event is being organized in collaboration with Dr. Adil Harroud (McGill) and in partnership with Muscular Dystrophy Canada and IgG4ward.
Registration is free and lunch will be served. We can’t wait to see you in Montreal!
https://www.eventbrite.com/e/1986690663254?aff=oddtdtcreator
The Sumaira Foundation team
—
CIDP stands for chronic inflammatory demyelinating polyneuropathy
IgG4-RD stands for immunoglobulin G4-related disease
MG stands for myasthenia gravis
MOGAD stands for myelin oligodendrocyte glycoprotein antibody-associated disorder
NMOSD stands for neuromyelitis optica spectrum disorder

Journée patients – Maladies neuroinflammatoires rares et apparentées
2026-06-13 11:00 - 18:00 (America/New_York) | Plaza Centre-Ville, 777 Blvd Robert Bourassa, Montreal, Quebec, H3C3Z7, Canada
À tous les patients et aidants touchés par des maladies neuro-inflammatoires rares à Montréal et dans la province de Québec!
Montréal nous voilà !
Vous ou l’un de vos proches est touché par : la CIDP*, l’IgG4-RD*, la MG*, la MOGAD* ou la NMOSD* ? Vous êtes les bienvenus à notre événement le samedi 13 juin.
Rejoignez-nous pour une journée d’information, de partage et de divertissement pour :

Rencontrer des patients, des aidants et des cliniciens de la région ainsi que nos partenaires
Poser toutes vos questions en direct à des experts sur la gestion des symptômes, les traitements et thérapies, les comorbidités et bien plus encore
Découvrir les dernières avancées en matière de recherche par les spécialistes locaux

Cet événement sera bilingue. La journée se tiendra en anglais avec une traduction simultanée pour les personnes parlant français. L’après-midi, des ateliers et des discussions en français ont été spécifiquement prévus avec des professionnels de santé et des intervenants parlant français. Tous les participants, qu’ils soient anglophones ou francophones, pourront ainsi participer pleinement à la journée.
Cet événement est organisé en collaboration avec le docteur Adil Harroud (Centre universitaire de santé McGill) et en partenariat avec les associations Muscular Dystrophy Canada et IgG4ward.
L’inscription est gratuite et un repas sera servi. Nous avons hâte de vous voir à Montréal !
https://www.eventbrite.com/e/1986690811698?aff=oddtdtcreator
L’équipe de The Sumaira Foundation
—
CIDP : polyneuropathie inflammatoire démyélinisante chronique
IgG4-RD : maladie associée aux IgG4
MG : myasthénie auto-immune
MOGAD : Maladie du spectre des anticorps anti-MOG
NMOSD : neuromyélite optique

TSF HCP Caregivers - Diffusing Family Conflict
2026-06-14 18:00 - 19:00 (Africa/Johannesburg) | Virtual: Global

CAR-T: What Does This Mean for Rare Neuroimmune Disorders?
2026-06-17 17:00 - 18:00 (America/New_York) | Virtual: Global
You’ve likely heard about CAR-T but do you know what it is and what it means for those living with rare neuroimmune disorders?
Join us on June 17th at 5:00 PM EST for an informative and patient-friendly webinar featuring Dr. Michael Levy and Dr. Marcela Maus, experts from Massachusetts General Hospital/Harvard Medical School, who will break down this complex treatment approach in a way that’s easy to understand. During this time, our expert speakers will educate our live audience about what CAR-T is, how it works and why researchers are hopeful about its potential in conditions like NMOSD, MOGAD, and beyond.
Whether you’re newly diagnosed, living with a condition, or supporting a loved one, this session is designed to empower you with knowledge, clarity and hope for the future of this breakthrough treatment.

Attendees who join live will also have the opportunity to ask questions directly to the experts during the Q&A portion. This webinar will be recorded and made available for replay on TSF’s YouTube channel.
This program was made possible with support from Amgen.

Rochester Patient Day for Rare Neuroinflammatory & Related Disorders
2026-06-20 11:00 - 17:00 (America/Chicago) | Mayo Civic Center, 30 Civic Center Drive Southeast, Rochester, MN, 55904, United States
TSF is inviting patients and caregivers impacted by rare neuroinflammatory & related disorders from Minnesota and the upper Midwest region!

We’re coming to Rochester!
Are you or your loved one impacted by: AE*, CIDP*, MG*, MOGAD*, NMOSD*, or SPS*? You’re invited to our event on Saturday, June 20th.
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. Eoin Flanigan (Mayo Clinic Rochester) and Dr. John Chen (Mayo Clinic Rochester) and in partnership with Autoimmune Encephalitis Alliance, MG Holistic Society and The Stiff Person Syndrome Research Foundation.
Registration is free and lunch will be served.
Childcare services will be available throughout the duration of the day.
We can’t wait to see you in Rochester!
https://www.eventbrite.com/e/rochester-patient-day-for-rare-neuroinflammatory-related-disorders-tickets-1986578610100
The Sumaira Foundation team
—
AE stands for autoimmune encephalitis
CIDP stands for chronic inflammatory demyelinating polyneuropathy
MG stands for myasthenia gravis
MOGAD stands for myelin oligodendrocyte glycoprotein antibody-associated disorder
NMOSD stands for neuromyelitis optica spectrum disorder
SPS stands for stiff person syndrome

Vivir bien con NMOSD: Cómo manejar los desafíos físicos, mentales y sociales
2026-06-24 20:00 - 21:00 (America/New_York) | Virtual: Colombia, Colombia
Vivir con NMOSD puede afectar muchos aspectos de la vida diaria: física, emocional y socialmente.
Únase a TSF LatAm para un importante seminario web, “Vivir bien con NMOSD: Cómo manejar los desafíos físicos, mentales y sociales”, enfocado en ayudar a pacientes y familias a comprender y afrontar mejor estos desafíos.
Este programa contará con la participación de la Dra. Adriana Casallas Vanegas (Colombia) y la Dra. Felisa Leguizamón (Argentina), y será moderado por Lizzy, paciente con NMOSD y Embajadora de TSF en México. Juntas, conversarán sobre estrategias para manejar los síntomas, cuidar el bienestar mental, mejorar la calidad de vida y fortalecer las redes de apoyo mientras se vive con NMOSD.
– 24 de junio de 2026
– 7PM COT / 9PM ART
https://us02web.zoom.us/webinar/register/WN_nsxeD-TRRxaMS_YqbHPIRw
Quienes asistan en vivo tendrán la oportunidad de hacer preguntas directamente a las expertas durante la sesión.

Understanding Step Therapy: How Insurance Decisions Shape Neuroimmune Treatment
2026-06-25 20:00 - 21:00 (America/New_York) | Virtual: Global
Understanding insurance coverage can be overwhelming, especially when treatment decisions are impacted by policies like step therapy. Join us Thursday, June 25 at 5:00 PM PT / 8:00 PM ET for an important conversation with Dr. Rosemarie Walch about how insurance requirements can influence access to care for people living with rare neuroimmune disorders.
In this webinar, Understanding Step Therapy: How Insurance Decisions Shape Neuroimmune Treatment, Dr. Walch will explain what step therapy is, why it exists, and how it can affect treatment timelines, medication access, and patient outcomes. Attendees will also learn practical strategies for navigating insurance barriers, advocating for appropriate care, and working with their healthcare teams throughout the process.
Those who attend live will have the opportunity to ask questions during the session.
Made possible with support from Amgen.

TSF HCP Caregivers - Fitting in Fitness
2026-07-12 12:00 - 13:00 (America/New_York) | Virtual: Global

Nutrición en Enfermedades Desmielinizantes
2026-07-14 19:00 - 20:00 (America/Bogota) | Virtual: Colombia, Colombia
Nutrir el cuerpo es fundamental cuando se vive con una enfermedad desmielinizante.
Acompáñenos con el Dr. Carlos Navas de Colombia, quien lidera la iniciativa de Inmunonutrición LATAM de LACTRIMS, para conocer las recomendaciones actuales y consejos prácticos sobre nutrición para las personas que viven con enfermedades desmielinizantes.
– 14 de julio de 2026
– 7:00 p. m. (hora de Bogotá, Colombia)
https://us02web.zoom.us/webinar/register/WN_FIj640dVRgmhahBQlgNSNw
Los participantes que se conecten en vivo tendrán la oportunidad de hacer preguntas al Dr. Navas en tiempo real durante una sesión interactiva de preguntas y respuestas. No se pierda esta oportunidad de aprender cómo la nutrición puede apoyar la salud y el bienestar general en el contexto de las enfermedades neuroinmunológicas.

TSF HCP Caregivers - Music Can Improve Quality of Life
2026-08-16 12:00 - 13:00 (America/New_York) | Virtual: Global

TSF HCP Caregivers - Rewards of Caregiving
2026-09-13 12:00 - 13:00 (America/New_York) | Virtual: Global

TSF HCP Caregivers - Family Caregivers
2026-10-11 12:00 - 13:00 (America/New_York) | Virtual: Global
