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…
Immunovant will use a $200 million strategic investment from Roivant Sciences to advance IMVT-1401, its investigational therapy for myasthenia gravis (MG) and other autoimmune conditions. A pivotal clinical trial testing IMVT-1401 in people with MG is expected to be launched within the next 12 months, according to…
An elderly man in India developed generalized myasthenia gravis (MG) after contracting COVID-19, but his condition improved after he was given adequate treatment, a case report described. This new case adds weight to eight other recent reports indicating that COVID-19 may trigger new-onset MG, with most cases occurring in…
Digital-native marketing agency closerlook has garnered a bronze Pharma Lion for a documentary series that depicts life with myasthenia gravis (MG). The award was announced at the Cannes Lions International Festival of Creativity in France. The docuseries “A Mystery to Me” focuses on revealing the hidden toll…
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…
Analysis of five bacterial markers present in the gut microbiome — the community of microbes living in the gut — may help in diagnosing myasthenia gravis (MG) in children, according to a Chinese study. The study, “Metagenome-wide association study of gut microbiome revealed potential microbial marker…
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…
Patients who start experiencing symptoms of myasthenia gravis (MG) after age 65 have an overall good prognosis and response to immunosuppressive treatments, according to a recent Canadian study. In addition, the presence of other medical conditions, or comorbidities, had no effect on the severity of MG symptoms or on…
Ultomiris (ravulizumab-cwvz) rapidly and sustainably eased symptom severity in adults with generalized myasthenia gravis (gMG), according to top-line data from a Phase 3 trial. Alexion Pharmaceuticals, the therapy’s developer, now plans to submit regulatory applications requesting approval of Ultomiris for gMG in the U.S., Europe, and Japan, later…
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…
Get regular updates to your inbox.
