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How we did
Have you read the latest news?
Action Plan The Welsh Government have now published their Rare Diseases Action Plan in support of the 2021 UK Rare Disease Framework. The Wales Rare Diseases Action Plan 2022-2026 is available at the following links: English version Welsh version
The updated CureGSD1b website is now live.
The updated GSD & Me website is now live.
An update on the appraisal of treatments for Pompe by NICE.
First patient receives Moderna mRNA trial infusion for GSD1a.
The commitment is at UCLH, 10am to 4pm every Wednesday, to support the McArdle team and to directly assist and guide patients.
Just a month to go to the “Walking in Wiltshire” get-together weekend for all those with McArdle’s. 17-19 June.
AGSD-UK can provide support to individuals and families affected by GSD.
What do you need from AGSD-UK?
For personal stories on an individual GSD, visit the page for that GSD.
What and who we are
- National support group for those affected by Glycogen Storage Disease (GSD) and their families.
- Membership based with an elected board of trustees.
- A company limited by guarantee and a registered charity.
- Collaborators with UK rare disease and international GSD groups.
Keep in touch
Register FREE with AGSD-UK to keep in touch with the latest developments and future conferences, workshops, courses and fundraising events. It helps you keep in touch with other patients and families. You will receive our magazine, Glisten, by email.