The use of immunomodulatory therapy based on type 1 interferons (IFNs) may trigger neuromyelitis optica spectrum disorder (NMOSD), according to a new case report. Researchers in China described the case of a 24-year-old man diagnosed with the autoimmune disease after receiving treatment with IFN-alpha, a…
Causes
People with neuromyelitis optica spectrum disorder (NMOSD), but lacking anti-AQP4 and anti-MOG antibodies, show no signs of damage to astrocytes — nervous system cells attacked in NMOSD — when compared to those with anti-AQP4 antibodies. Those findings from a recent study suggest that the mechanisms underlying NMOSD symptoms in…
The nonprofit RARE-X is creating an easily-accessible, centralized data hub for all rare disease patient data that can help researchers answer questions about existing disorders, discover new ones, and work toward finding treatments. It was spun out of the work that Nicole Boice, founder and chief engagement officer of…
A newly launched non-profit institute is seeking to advance research, and the development of new therapies, for people with rare diseases — a patient community with some of the largest therapeutic needs, but one that is often left behind. Named the Institute for Life Changing Medicines, the project was…
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,…
In most people with neuromyelitis optica spectrum disorder (NMOSD), autoantibodies against aquaporin-4 (AQP4) coordinate a complex series of immune activities that drive the disease. Better understanding of these disease-causing mechanisms may help in efforts to find new treatments for NMOSD patients. These mechanisms were explained in the lecture, “…
People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare disease patients overall give their healthcare experience a medium-low rating, of 2.5 on a scale of 1 to 5,…
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