Conferences

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

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Fundraising

Join our fundraising events or do your own thing.

Find out more

Calendar and recipe book

Special offer… last few 2019 calendars now £5.

Order here

Welcome, take a look at our new site. What’s new & What’s to do. You can contribute.

What do you need from AGSD-UK?

I or a family member are diagnosed and need information

Learn about GSD

I or a family member need some help and support

Access support

I would like to get involved with supporting AGSD-UK

Become involved

I need sources of medical guidance for someone with GSD

Find guidance

I need information on governance, policies, reporting and finance

Get the data

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 company limited by guarantee and a registered charity.
We are a membership based association with an elected board of trustees.
We are collaborators with other UK based rare disease groups.
We are members of the International Association for Muscle Glycogen Storage Disease (IamGSD) and the International Pompe Association (IPA).

Keep up with the latest news

International sales for the AGSD-UK recipe book

Jan 21, 2019

AGSD-UK has an international reputation, so we were not totally surprised by an order from Saudi Arabia for our recipe book.

Come, join, meet, share… International Pompe Day

Jan 18, 2019

Come and join us at one of five venues to help celebrate International Pompe Day, Friday 15 April 2019.

Naidex exhibition will focus on staying independent

Jan 11, 2019

Free exhibition of aids and equipment to run again in 2019, at the NEC, Birmingham, 26 & 27 March.

Promising initial results in gene therapy trial

Jan 4, 2019

Dr David Weinstein reports rewarding preliminary results from the first ever gene therapy trial in a Glycogen Storage Disease.

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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.