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, “…
Conference
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…
The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…
Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how their respective organizations came to be, as well as the benefits of creating patient registries and how they can help…
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