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 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 […]
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 […]
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 […]
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 […]
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, […]
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 […]
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, […]
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 […]
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 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 […]
