Mary Chapman, features writer —

A partnership between Muscular Dystrophy Canada (MDC) and Technology for Living (TFL) will seek to provide a cough assist device to any adult in British Columbia who has neuromuscular disease and needs one. Under the new partnership, adults who are registered with the…

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…

A CureDuchenne Ventures equity investment will support Dyne Therapeutics in developing precision treatments aimed at repairing muscles in Duchenne and other muscular dystrophies. The funding — whose amount was not disclosed — will help to advance the company’s efforts to target the genetic makeup of Duchenne muscular dystrophy (DMD), with a goal…

Invitae and the Muscular Dystrophy Association (MDA) are partnering to expand access to free genetic testing and post-test counseling in the United States and Canada, with a goal of more quickly diagnosing muscular dystrophy. Testing is offered at no charge through Invitae’s Detect Muscular Dystrophy program, and is…

The sixth annual Napa in Newport wine auction raised more than $1 million to support CureDuchenne’s mission to extend and enhance the lives of people with Duchenne muscular dystrophy (DMD) and find a cure for the disorder, the nonprofit group said. Held Feb. 29 at the…

Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding of and treatments for rare diseases, as well…

Continuing its support, CITGO marketer Graham Enterprise (GEI) raised $123,000 last year for the Muscular Dystrophy Association (MDA). With support from its network of retailers and marketers, including Illinois-based Graham Enterprise, CITGO is the MDA’s largest corporate sponsor. To date, the petroleum company has collected more than $250…

Four grassroots organizations are collaboratively funding a $200,000 grant to a University of Missouri School of Medicine researcher to develop next-generation gene therapy vectors for Duchenne muscular dystrophy (DMD). The foundations Ryan’s Quest, Michael’s Cause, Pietro’s Fight, and Powers Promise are awarding the…

PTC Therapeutics has launched its sixth annual global grant program for patient advocacy organizations that seek to develop innovative projects for the Duchenne muscular dystrophy (DMD) community. Currently focused on DMD, the Strategies to Realize Innovation, Vision and Empowerment (STRIVE) program supports nonprofits that seek to create…