Author Archives: Mary Chapman

Cure SMA Offers Free Virtual Therapy Sessions

To help with stress or anxiety brought on by the COVID-19 pandemic or other issues, adult patients with spinal muscular atrophy (SMA) in the U.S. are being offered up to three half-hour live video sessions with a licensed therapist. The Adults with SMA Virtual Therapy Program is free…

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of…

Cure SMA to Open Series of Career Panel Webinars on Feb. 16

Beginning next month, Cure SMA will offer a three-part Career Panel Webinar Series tailored to the spinal muscular atrophy (SMA) community in the United States. The series, sponsored by Biogen, opens Feb. 16 at 7 p.m. EST. The hourlong event will include a question-and-answer session, and those interested…

NORD’s Caregiver Respite Program Continues Through Pandemic

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give…

New Cure SMA Webinar Series to Focus on Health, Wellness

Cure SMA has developed a new three-part webinar series that delves into health and wellness topics pertinent to the spinal muscular atrophy (SMA) community. The three monthly installments of the Wellness Webinar Series will teach participants about a variety of strategies and tools that can be…