by Madaline Spencer | Oct 24, 2024
Charlotte Handberg, PhD, Senior Researcher at the National Rehabilitation Center for Neuromuscular Diseases in Denmark, and Associate Professor at Aarhus University, discusses results from a survey of parents’ hopes, worries, and needs for their children with spinal...
by Madaline Spencer | Oct 23, 2024
Thomas Crawford, MD, Pediatric Neurologist at Johns Hopkins, discusses the results from the DEVOTE study using a higher dose of nusinersen to treat patients with spinal muscular atrophy (SMA). SMA is a group of genetic neuromuscular disorders that affect the...
by Madaline Spencer | Oct 22, 2024
Emma Robinson, Neuromuscular Research Physiotherapist at the John Walton Muscular Dystrophy Research Center at Newcastle University, discusses how losing the ability to stand affects dysferlinopathy patients’ social participation. Dysferlin-related...
by CheckRare Staff | Oct 21, 2024
Dr. Sonal Kumar, an Assistant Professor of Medicine, and Director of Clinical Hepatology at Weill Cornell Medical College in New York, NY discusses the integral role of the patient voice in navigating treatment decisions and determining an individualized care plan for...
by Madaline Spencer | Oct 17, 2024
Cathy Turner, Project Manager for DMD Care UK at the John Walton Muscular Dystrophy Research Center at Newcastle University, discusses the Duchenne Education for Care and Research Initiative (DECRI). DMD is a rare genetic disorder due to mutations in the...
