News

NORD Rare Disease Summit, Online Oct. 18-19, Open for Registration

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…

Myasthenia Gravis May Be Tied to Kidney Cancer, Study Finds

Renal cell carcinoma, or kidney cancer, may be linked with myasthenia gravis due to an abnormal immune system response to cancer cells, a study of six people with these two disorders reported. Thymomas, or tumors of the thymus, are known to possibly trigger autoimmune diseases, including myasthenia gravis, in what is…

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…

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.