News

Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric Sid, MD, program officer for the Office of Rare Diseases Research (ORDR), said it is difficult to estimate how…

Soliris (eculizumab) is better than rituximab at controlling myasthenia gravis (MG) symptoms over a two-year period, according to a new analysis. Results were detailed in the study, “Eculizumab versus rituximab in generalised myasthenia gravis,” published in the Journal of Neurology, Neurosurgery and Psychiatry. Soliris…

Immunosuppressant medications significantly reduced the risk of ocular myasthenia gravis (MG), which affects only eye and eyelid muscles, progressing to a generalized form of the disease that affects other muscles, a Chinese study suggests. These findings indicate that immunosuppressant medications should be considered early on in the treatment…

Software maker BrightInsight is teaming up with the biopharmaceutical company UCB to develop and commercialize a new mobile app to help people with myasthenia gravis (MG) manage their disease and improve their care and clinical outcomes. “MG is a rare, challenging and unpredictable disease, and innovation is…

Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…

Men with late-onset myasthenia gravis (MG) show poorer memory and spatial orientation, as well as lower-than-normal volumes of brain regions involved in such functions, than their healthy peers, according to a small single-center study in Germany. These findings add to a number of studies reporting cognitive deficits in MG…

Cabaletta Bio has been cleared by the U.S. Food and Drug Administration (FDA) to start first-in-human clinical testing of MuSK-CAART, a cell-based therapy being developed to improve muscle strength in people with MuSK antibody-positive myasthenia gravis and help them in their activities of daily living. “We look forward to…

Bionews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A Window…

To celebrate Rare Disease Day, on Feb. 28, Janssen has launched a refreshed national campaign, called iMaGineMyMG, to increase awareness about myasthenia gravis (MG), provide support to people living with the disease and their families, and open up opportunities for potential research. The company has redesigned the campaign’s…

A rare disease puts an economic burden on the patients, families, and caregivers that it affects, and will no doubt be an integral part of discussions on Rare Disease Day 2022, which brings international awareness about the more than 300 million people living with rare disorders. Part of that burden,…