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Next conference – 5/6 October 2019, Daresbury Park, Cheshire


Join our fundraising events or do your own thing.

Rare Disease Day

Show your rare. Show  you care. 28 February.

Calendar and recipe book

Special offer… last few 2019 calendars now £5.

Welcome, take a look at our new site. See what’s new. You can contribute.

What do you need from AGSD-UK?

I or a family member are diagnosed and need information

I or a family member need some help and support

I would like to get involved with supporting AGSD-UK

I need sources of medical guidance for someone with GSD

I need information on governance, policies, reporting and finance

What and who are AGSD-UK?

  • We are the national support group for those affected by Glycogen Storage Disease (GSD) and their families.
  • We are a membership based association with an elected board of trustees.
  • We are a company limited by guarantee and a registered charity.
  • We are collaborators with other UK based rare disease groups.
  • We are members of international bodies such as the International Pompe Association (IPA) and the International Association for Muscle Glycogen Storage Disease (IamGSD).

Keep up with the latest news

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.

Personal stories