“The McArdle’s Experience” walking course.
The walking course for this year is to be held in the Pembrokeshire Coast National Park, 30 July to 6 August. Full details now available here on our website.
Sioned’s Rare Disease Day 2022.
Sioned Williams celebrates Rare Disease Day with a short video talk about her life and career with McArdle’s, and an appeal via JustGiving.
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
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.