News

Advocates Lobby US Congress During Virtual Rare Disease Week

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 $200M Investment to Advance IMVT-1401

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…

Case Study: COVID-19 May Trigger MG, But Outcomes Can Be Good

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…

Docuseries Earns Award for Depicting Lives of MG Patients

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…

US Patient Groups Give Thumbs-Up to Rule Against Surprise Billing

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…

Gut Bacterial Markers May Aid Diagnosis of Children

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…

Partnership Aims to Lower Out-of-Pocket Costs for Rare Disease Meds

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…

Older Late-onset Patients Have Overall Positive Prognosis

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 Helps Ease gMG Symptoms in Ongoing Phase 3 Trial

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 Open for 2022 Eurordis Black Pearl Awards

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…

2021 Myasthenia Gravis Survey Results

BioNews Survey Infographic

Myasthenia Gravis News conducted a survey from Feb. 11-March 28 to gain greater insight into the characteristics of the MG community and disease management. Results of the survey have now been published. Click on the image to view the infographic, and click here to read the story.