News

Dyne Therapeutics announced that it has joined in supporting an ongoing global and observational natural history study to better inform the development of treatments for facioscapulohumeral muscular dystrophy (FSHD). The company’s support — the amount was not disclosed — will help to bring new sites across Europe into…

Parent Project Muscular Dystrophy (PPMD) announced the screening of a first baby for Duchenne muscular dystrophy (DMD) within the organization’s pilot newborn screening program in New York. The $5 million pilot program, launched in collaboration with the American College of Medical Genetics and Genomics (ACMG) and New York State,…

About 700 people have registered to attend CureDuchenne’s Futures conference taking place Oct. 11-13 in suburban Los Angeles — more than six times the number of participants at the November 2018 Futures meeting near Boston. The annual gathering, to be held at Anaheim’s Disneyland Hotel, will be the largest…

Expanding certification of clinics that provide optimal Duchenne muscular dystrophy care, Parent Project Muscular Dystrophy (PPMD) has announced its first Adult Certified Duchenne Care Center. An extension of the nonprofit’s five-year-old, 26-member Certified Duchenne Care Center Program (CDCCP), the neuromuscular clinic at University of Missouri Health…

Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, D.C., couldn’t come at a better time, says Marshall Summar, MD, chairman of NORD’s board of directors. “The pace of discovery in rare diseases has gone from brisk to hypersonic,” Summar told Bionews Services, publisher…

To help families find the ideal equipment at every stage of need for those with Duchenne muscular dystrophy (DMD), CureDuchenne launched on its website a comprehensive and interactive guide. Presenting the latest offerings together in one place, the digital Durable Medical Equipment Guide (DME) is meant to reduce frustration…