COVID-19 vaccines are safe and well-tolerated by people with the rare neurological disorders neuromyelitis optica spectrum disorder (NMOSD), MOG-antibody disease (MOGAD), and transverse myelitis in the U.S., according to a recent study. Patients surveyed about their vaccine experiences reported a rate of side effects similar to that of the…
treatment
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…
My heart goes out today to the neuromyelitis optica (NMO) patients in Cuba for two reasons. Firstly, it is difficult for them to access treatment right now. Secondly, the island is experiencing tropical weather. Neither factor is helpful for NMO patients. Mileidys wonders if we are in the…
The SPHERES registry, an observational study to better understand the underlying mechanisms and clinical course of neuromyelitis optica spectrum disorder (NMOSD), as well as effects of current treatments, has enrolled its first patient. SPHERES, which stands for Synergy of Prospective Health & Experimental Research for Emerging Solutions in NMOSD,…
I still remember the feeling of despair I had while sitting on a cool stretcher in the neurologist’s office, after hearing devastating news about my health. The neurologist admitted that he had no idea what I had, but he assured me it was a severe condition. I wondered why after…
The European Commission has approved Enspryng (satralizumab) for the treatment of people, 12 and older, with neuromyelitis optica spectrum disorder (NMOSD) who are positive for antibodies against the aquaporin-4 protein (AQP4-IgG). The approval covers Enspryng for use as a monotherapy (on its own) or in combination with other…
A wearable neurostimulation device developed by NeuroMetrix is being investigated in a Phase 2 clinical trial as a potential pain-relieving treatment for people with neuromyelitis optica spectrum disorder (NMOSD). The trial (NCT04614454) is expected to recruit 46 adult NMOSD participants who test positive for aquaporin-4 antibodies and…
Enspryng (satralizumab), a therapy for adolescents and adults with neuromyelitis optica spectrum disorder (NMOSD), has been recommended for reimbursement through Canada’s public drug plans, if certain conditions are met. Among the conditions established by the Canadian Drug…
Since 2012, I have been using Rituxan (rituximab) to treat my neuromyelitis optica. I had no major complaints about it until 2018. My neurologist back then referred me to an immunologist, who recommended I start immunoglobulin replacement therapy (IVIG) to increase the levels of immunoglobulins that had been…
Treatment with Uplizna (inebilizumab-cdon) can reduce disability progression in people with neuromyelitis optica spectrum disorder (NMOSD), findings from the N-MOmentum clinical trial show. The results were published in Neurology Neuroimmunology & Neuroinflammation, in a study, “Disability Outcomes in the N-MOmentum Trial of Inebilizumab in Neuromyelitis…
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