Move for USA-based GSD expert Dr. David Weinstein.
Dr. Weinstein, long-time champion of improved diagnosis and treatment for hepatic GSDs due to move to Passage Bio as VP.
Rare Barometer survey of COVID-19 in rare disease.
Survey on rare disease patients’ experience of COVID-19 will enable EURORDIS to measure the effect on lives and inform decision-makers.
Support the call for new born screening.
New born screening has long been championed by AGSD-UK. Now you have an opportunity to support a larger national campaign.
Survey of muscle GSDs and COVID-19 issues.
IamGSD has launched a survey of people affected by muscle GSDs and how they are being affected by the COVID-19 pandemic.
Mendelian – reducing diagnostic delay in GSDs.
Mendelian, working to reduce diagnostic delay, and thus improve quality of life, in rare diseases including glycogen storage disease.
AGSD-UK new registrations up by 26% in 2019.
During 2019 the rate of new registrations with AGSD-UK increased by 26% over the previous year. We consider the reasons why.