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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…

An improved understanding of the biological processes that drive neuromyelitis optica spectrum disorder (NMOSD) has led to treatment advancements in recent years. In a presentation at the Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) Forum 2021, Sean Pittock, MD, director of the Mayo Clinic’s Center for…

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, “…

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned how to turn those trials into triumphs. At age 9, a stroke due to his disease left him paralyzed…

At an educational seminar next month, experts will discuss advances in the diagnosis and care of neuromyelitis optica spectrum disorder (NMOSD), as well as the ongoing COVID-19 pandemic and how it is affecting the NMOSD community.  Sponsored by the…

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…

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,…