News

Soliris (eculizumab) significantly reduced the risk of disease relapses in people with neuromyelitis optica spectrum disorder (NMOSD) over nearly three years, according to new data from the clinical trial PREVENT and its extension study. Additional findings project that long-term Soliris treatment may reduce relapse risk over the course of…

Uplizna (inebilizumab-cdon) reduced pain among adults with neuromyelitis optica spectrum disorder (NMOSD), according to an analysis of the N-MOmentum Phase 2/3 clinical trial. The results were presented by Ho Jin Kim, MD, PhD, an investigator in the trial, at the 2021 virtual American Academy of Neurology Annual Meeting,…

Using a live cell-based assay to test for the presence of aquaporin-4 antibodies (AQP4-IgG) can accurately identify people who have neuromyelitis optica spectrum disorder (NMOSD), new research suggests. Scientists said the cell-based assay was “a highly specific diagnostic biomarker of NMOSD and did not yield false positive results.” These findings…

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…