News

Register Now for Global Genes’ RARE Patient Advocacy Summit

Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29, and some seats also are available for attending the event in person in San Diego. “Here you’ll have the opportunity to connect and engage with others…

Circular RNA Implicated in MG, Study Suggests

Altered production of circular RNA impaired the process of muscle cell growth and regeneration in people with myasthenia gravis (MG), a study has suggested. More studies investigating the role of circular RNA in MG may identify new molecular markers to monitor disease progression and reveal therapeutic targets, the researchers…

Therapeutic Plasma Exchange Eased Refractory MG

Therapeutic plasma exchange improved symptoms related to hard-to-treat myasthenia gravis, resulted in reduced use of immunosuppressants, and was well-tolerated by patients, according to a new study. That study, “Clinical experience with maintenance therapeutic plasma exchange in refractory generalized myasthenia gravis,” was published in the Journal of…

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 into…

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…