MetabERN survey – deadline extension!
MetabERN has extended its survey deadline to June 21st 2020
NORD plans Virtual Forum – 18 and 19 July.
For 2020 NORD plans to hold its annual patient and family forum as a virtual event. It will be on 18 and 19 July
Benefits Advisor joins the AGSD-UK team.
AGSD-UK has appointed Julie Jackson to a temporary post to address a large increase in requests for help with state benefits.
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.