An analysis of pharmacological data supports the observed clinical efficacy of Soliris (eculizumab) in significantly reducing relapses in patients with neuromyelitis optica spectrum disorder (NMOSD) given the therapy in the PREVENT Phase 3 clinical trial. At its approved dose, Soliris led to rapid, sustained, and complete suppression…
News
A case report has detailed the clinical journeys of two identical twin sisters’ simultaneous diagnosis with neuromyelitis optica spectrum disorder (NMOSD), a rare occurrence. NMOSD was last reported in identical twin sisters in 1938, but those girls’ symptoms started two years apart, unlike the present case. The case report,…
The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues in a nod to its increased use during the ongoing COVID-19 pandemic. NORD’s report card project began seven…
Uplizna (inebilizumab-cdon) was just as safe and effective in people with neuromyelitis optica spectrum disorder (NMOSD) treated after only one symptomatic attack as those treated after two or more attacks, according to an analysis of N-MOmentum Phase 2/3 trial data. This sub-analysis had sought to understand how a…
The video series “Imagine My Life With NMO” has been launched by the Sumaira Foundation to help others in understanding what daily life can be like with neuromyelitis optica spectrum disorder (NMOSD). In the series, Sumaira Ahmed, the European foundation’s creator and a NMOSD patient, interviews other patients, their loved…
Healthcare providers involved in diagnosing and treating rare diseases believe that increased physician education and collaboration with specialized facilities will have the greatest positive impact on treating these conditions over the next five years, according to results from a 2021 survey. Definitive Healthcare, a healthcare commercial intelligence company, conducted…
Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric Sid, MD, program officer for the Office of Rare Diseases Research (ORDR), said it is difficult to estimate how…
InnoCare Pharma will soon launch a Phase 2 clinical trial in China to test orelabrutinib, its oral investigational Bruton tyrosine kinase (BTK) inhibitor, to treat neuromyelitis optica spectrum disorder (NMOSD). The announcement comes after China’s National Medical Products Administration approved the company’s request to conduct such a trial,…
Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…
This March, people with neuromyelitis optica spectrum disorder (NMOSD) are celebrating NMO Awareness Month by sharing stories of how the progressive autoimmune disorder has not stopped them from living meaningful lives. The initiative calls attention to NMOSD, a condition that affects approximately 15,000 people in the U.S. and 10,000…
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