News

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

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…

Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in Europe living with rare diseases are left behind by the start of a new decade. As part of…

The Illness Challenge Foundation (ICF) sponsored the second annual Asia-Pacific NMOSD Patient Day in Beijing, China, to increase awareness and improve care for those living with neuromyelitis optica spectrum disorder (NMOSD). The May 25 event brought together NMOSD patients, neurologists and other healthcare professionals, and representatives from a variety…

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…

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…

Aeterna Zentaris GmbH has acquired exclusive global rights to develop, manufacture, and commercialize highly-specific, autoimmune modifying proteins for the treatment of neuromyelitis optica spectrum disorder (NMOSD). The company, a subsidiary of Aeterna Zentaris, reached an agreement with Julius-Maximilians-University Wuerzburg (JMU), in Germany, which developed the technology, called AIM Biologicals.

A branch of the European Medicines Agency has recommended that Enspryng (satralizumab) be approved to treat patients, 12 and older, with neuromyelitis optica spectrum disorder (NMOSD), who carry antibodies against the aquaporin-4 protein (AQP4-IgG). The recommendation, made by the agency’s Committee for Medicinal Products for Human Use…

More than half of the people with rare diseases and their caregivers, asked in a survey, were undecided or less than willing to be vaccinated for COVID-19 if a vaccine was approved under emergency use authorization instead of the routine process, the EveryLife Foundation for Rare Disease reports. These findings…

Soliris (eculizumab) significantly reduced the risk of disease relapses in people with neuromyelitis optica spectrum disorder (NMOSD) over nearly three years, according to new data from the clinical trial PREVENT and its extension study. Additional findings project that long-term Soliris treatment may reduce relapse risk over the course of…