Neuromyelitis optica spectrum disorder

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Neuromyelitis optica spectrum disorder

Synonyms: Devic disease | NMOSD

A rare inflammatory disease of the central nervous system characterized mainly by attacks of uni- or bilateral optic neuritis (ON) and acute myelitis.

Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.

Reference: Access aggregated data from Orphanet at Orphadata.

Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version March 2024

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Neuromyelitis optica spectrum disorder?

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Advocacy Organizations

Aicardi-Goutieres Syndrome Advocacy Association

AGSAA is a global coalition of deeply dedicated parent advocates working alongside clinicians, researchers, and scientists. We are united in our desire to improve the lives of individuals and families living with Aicardi-Goutières Syndrome and those yet to be diagnosed. Everything we do reflects a sense of urgency to rescue patient potential and preserve quality of life through accelerating research and providing timely emotional and educational support alongside evolving clinical care recommendations to affected families.

CaeAli foundation

As an NMOSD patient, my mission is to give hope and offer support through the giving of flowers, at hospitals, infusion centers and various charitable events. My vision is to reach early career physicians, neurologists and ER staffs and be there at their ceremonial/graduation events and give celebratory flowers and educational tools around rare diseases.

HECI Medicine Incorporation

The objectives of HECI Medicine is to provide dependable access to affordable medicine and diagnostic tools to patients in Africa affected by rare diseases, collaborative with the scientific community to accelerate drug development for rare diseases therapies that are specific to populations in Africa, and collaborate with other rare disease organizations to ensure equitable access to health.

Siegel Rare Neuroimmune Association

The Siegel Rare Neuroimmune Association (SRNA) is a not-for-profit international organization dedicated to the support of children, adolescents, and adults with a spectrum of rare neuroimmune disorders including: Acute Disseminated Encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON) and Transverse Myelitis (TM). We support individuals living with rare neuroimmune diagnoses and their families, promote awareness to empower patients, families, clinicians and scientists, build a collaborative and dedicated clinical care network and help advance scientific understanding and research.

Unfixed

Unfixed produces media that elevates stories of people living with chronic illness, rare disease and disability. The Unfixed portfolio of projects demonstrates that living well is not about eradicating our wounds and weaknesses but understanding how they complete our identities and equip us to help others. Current and past productions include multiple mini-series, a podcast and feature film.

Clinical Trials

For a list of clinical trials in this disease area, please click here.