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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…
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…
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