News

New Data-sharing Program Aims to Speed Innovation in Rare Diseases

A new U.S. initiative called Rare Disease Cures Accelerator–Data and Analytics Platform — dubbed RDCA–DAP — aims to accelerate treatment innovation across rare diseases by sharing existing patient data and promoting the standardization of new data collection. Launched during a virtual workshop in September, the U.S. Food and Drug…

Myasthenic Crisis During Sedation Leads to Diagnosis

A recent case report describes an elderly woman who was first diagnosed with myasthenia gravis (MG) after experiencing a myasthenic crisis while being sedated for a surgical procedure. “This case reports a form of discovery of [a] myasthenic crisis outside the usual circumstance,” its authors wrote. “The prognosis depends…

1st Patient Dosed in Phase 3 Trial of Batoclimab in China

The first participant has been dosed in a Phase 3 clinical trial testing the efficacy and safety of batoclimab (HBM9161) in people with generalized myasthenia gravis (gMG) in China. “The first patient first dosing in the phase III study brings us one step closer to deliver the novel therapeutic…

Exercise Program Improved Muscle, Physical Function

Muscle and physical function improved in patients with clinically stable myasthenia gravis (MG) who participated in an individually tailored six-month exercise program, a small study has found. The exercise program, which combined aerobic and resistance training with stretches, was well-tolerated by all participants. “Physical exercise is safe, effective, and…

MGFA Poised for 2021 Coast-to-Coast Walk 2740 Challenge

With the goal of raising funds and awareness to improve care and find a cure for myasthenia gravis (MG), the Myasthenia Gravis Foundation of America (MGFA) is hosting the 2021 Coast-to-Coast Walk and 2740 Challenge on Nov. 13. The event, which will be held virtually this year,…

New Institute Aims to Leave No Rare Disease Patient Behind

A newly launched non-profit institute is seeking to advance research, and the development of new therapies, for people with rare diseases — a patient community with some of the largest therapeutic needs, but one that is often left behind. Named the Institute for Life Changing Medicines, the project was…

Swallowing Muscle Test May Help Diagnose MG

The flexible endoscopic evaluation of swallowing-tensilon test (FTT), a new diagnostic tool for myasthenia gravis (MG), can be used to distinguish people with swallowing difficulties due to MG from those having similar symptoms caused by other conditions, according to a new study. The study, “Detecting myasthenia…

Bionews Clinical Moving to Bring Trials Into ‘Continuum’ of MG Care

A new service, Bionews Clinical is seeking to bring more patients into relevant clinical trials by helping all involved — scientists, pharmaceutical companies, people with diseases — regard these studies as part of continuing care. “Today what happens is that the conversation about patients participating in a clinical trial is not…