Registration is now open for the 2021 Rare Diseases and Orphan Products Breakthrough Summit, which will be held virtually Oct. 18–19. The event, also known as the National Organization for Rare Disorders (NORD) Summit, brings the rare disease community together to network and discuss developments in treatments and research…
News
A system that stages neuromyelitis optica spectrum disorder (NMOSD) based on damage to astrocytes — the specific brain cells that are attacked in NMOSD — was recently developed by a team of researchers in Japan. While more work is needed, the system identifies four stages, largely based on astrocytopathy…
More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program, the event brings together community members from across the U.S. to…
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,…
The National Organization for Rare Disorders (NORD) is applauding the Biden administration for announcing a rule to protect consumers from surprise medical billing, in a joint statement with 26 other U.S. patient organizations. The interim final rule will implement patient protections required by the No Surprises Act. Surprise…
AllianceRx Walgreens Prime, a specialty and home delivery pharmacy, is partnering with TailorMed, a healthcare technology company, to help lower out-of-pocket prescription costs for specialty pharmacy patients. Medications attained through specialty pharmacies are those used to treat rare and chronic conditions in the U.S., and are often extremely costly. For…
Examining the thickness of certain retinal layers in the eye, along with structural changes in the eyes’ blood vessels, can help differentiate neuromyelitis optica spectrum disorder (NMOSD) from multiple sclerosis (MS), a study found. Overall, two particular retinal layers — the peripapillary retinal nerve fiber layer…
Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work to make a difference for the global rare disease community. The deadline for nominations is Sept. 10…
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…
Recent Posts
- The longest night of the year offers hope of brighter days with NMOSD
- Advanced plasma exchange therapy effectively eases NMOSD attacks
- Reaffirming that access to healthcare is a human right
- Brain, spinal cord shrinkage linked to distinct NMOSD outcomes: Study
- Reflecting on what I’m grateful for softens the edges of NMOSD
- When my invisible illness meets my very visible disabled parking spot
- Study IDs environmental factors tied globally to higher NMOSD risk
- Inflammatory protein S100A9 ID’d as new treatment target in NMOSD
- Connecting with others who have NMOSD gave me hope
- B-cell blocker used for MS reduces NMOSD relapses: Study