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The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education. For a second year, the #RAREis Scholarship Fund — supported by Horizon Therapeutics – will award 35 one-time scholarships, each…
CorEvitas and the Guthy-Jackson Charitable Foundation (GJCF) announced plans to launch a registry study for people with neuromyelitis optica spectrum disorder (NMOSD). Called SPHERES — which stands for Synergy of Prospective Health & Experimental Research for Emerging Solutions in NMOSD — the observational study is expected to…
The first three months after giving birth are a particularly high-risk time for developing neuromyelitis optica spectrum disorder (NMOSD) and for experiencing relapses when the disease is already established, an expert emphasized in a recent webinar hosted by the The Sumaira Foundation for NMO. The pregnancy-focused webinar featured…
As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking. But exactly how expensive — in terms of direct and indirect costs across rare disease populations — might still come as a surprise: almost…
Long-term treatment with Uplizna (inebilizumab-cdon) is safe and sustainably reduces the frequency of attacks in adults with neuromyelitis optica spectrum disorder (NMOSD), according to four-year data from the N-MOmentum Phase 2/3 clinical trial. Notably, these benefits also were observed among patients who previously received rituximab, an immunosuppressive therapy often…
Note: This story was updated March 29, 2021, to note that Uplizna is indicated for all NMOSD patients, regardless of the presence of aquaporin-4 water channel autoantibodies. Uplizna (inebilizumab-cdon) has been approved in Japan for preventing relapses in people with neuromyelitis…
Treatment with Soliris (eculizumab) does not increase the risk of infections or serious infections among people with neuromyelitis optica spectrum disorder (NMOSD) and antibodies against the protein aquaporin-4 (AQP4), even in those receiving accompanying immunosuppressive therapies. Those were the findings from a post hoc analysis of…
In summer 2014, 22-year-old Connor Judge was working as a landscaper when he experienced unusual pain in his legs and back. At first, the symptoms were presumed to be related to his landscaping work; visits to a few general practitioners were unremarkable. Then, on Aug. 29,…
Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example — but what’s the significance of pink, green, blue, and purple lights side-by-side? These are the colors most often used to represent Rare Disease Day. This…
Activities are underway this month to raise awareness about neuromyelitis optica spectrum disorder (NMOSD), a rare progressive autoimmune disorder that affects about 15,000 people in the U.S. Patients, caregivers, and advocates nationwide are flooding social media platforms, garnering state proclamations, participating in educational webinars, and holding fundraisers — all…
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