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Have you read the latest news?
Over The Wall Camp Opportunities.
Over the Wall have residential and virtual camps available in 2022.
Extension of Early Access to Medicines Scheme for trial Pompe drug.
An update on avalglucosidase alfa.
Success for our Benefits Advisor.
AGSD-UK’s Zainib Hussain has been providing much needed support.
GSD in the National News.
7 year old twins in Scotland have received their first Covid vaccinations.
CureGSD1b Research Ready Data Collection Plan.
The CureGSD1b Research Alliance is working extensively on a full understanding of the research landscape related to GSD1b at the moment.
Winter Season 2022
We again will be releasing videos on every Monday of January for our Winter Season.
Progress on NICE assessment of new treatments.
An update on the appraisal of treatments for Pompe by NICE.
Nigel Walker runs London Marathon to support AGSD-UK.
Well done to Nigel Walker who has completed the 2021 London Marathon.
Use the scroll links to move back and fore through our news stories.
If you have a GSD news story message us or see Notes for contributors.
Read some personal stories
Do you have an interesting personal story to tell? Just message us or visit the Notes for contributors.
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.