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…
News
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,…
Researchers report having uncovered the atomic structure of the acetylcholine receptor, the target of the abnormal immune response that causes most cases of myasthenia gravis (MG). They also detailed how the receptor is activated by changes in its shape when combined with two small molecules. Their work could help…
The nonprofit RARE-X is creating an easily-accessible, centralized data hub for all rare disease patient data that can help researchers answer questions about existing disorders, discover new ones, and work toward finding treatments. It was spun out of the work that Nicole Boice, founder and chief engagement officer of…
Nearly half of all people with myasthenia gravis (MG) in Poland were admitted to a hospital a mean of two times in 2018, although not always for complications of their disease, a recent nationwide database study reported. Reasons for hospital stays included relevant treatments,…
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