For 2020 NORD plans to hold its annual patient and family forum as a virtual event. It will be on 18 and 19 July
Dr. Weinstein, long-time champion of improved diagnosis and treatment for hepatic GSDs due to move to Passage Bio as VP.
Survey on rare disease patients’ experience of COVID-19 will enable EURORDIS to measure the effect on lives and inform decision-makers.
IamGSD has launched a survey of people affected by muscle GSDs and how they are being affected by the COVID-19 pandemic.
IamGSD has a limited-time opportunity to order McArdle’s “Second Wind” T-shirts, sweatshirts and hoodies. Order by 23 March.