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A vision test using a 2.5%-contrast letter chart is more effective than the conventional 100%-contrast chart at detecting previous episodes of optic neuritis, an eye condition that is often the first symptom of neuromyelitis optica spectrum disorder (NMOSD), a study shows. Results, drawn from responses in unaffected people and those…
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…
At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…
To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…
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…
Almost half of U.S. patients with neuromyelitis optica spectrum disorder (NMOSD) experienced relapses over a period of two years, according to an analysis of a large healthcare claims database. Such relapses — which lasted on average nearly 13 days — were treated more often with outpatient rather than hospital…
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…
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