Meet the Author | Jayne Mattingly, “This is Body Grief”
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, […]
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, […]
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 […]
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 […]
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 […]
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, […]
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 […]
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 […]
Los cuidadores de personas con condiciones neuroinmunes raras como NMOSD y MOGAD necesitan un espacio para contar sus experiencias. Este espacio para cuidadores es dirigido por un cuidador de Colombia […]
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 […]
¿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 […]
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 […]
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 […]
