Conferences

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

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Fundraising

Join our fundraising events or do your own thing.

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Rare Disease Day

Show your rare. Show you care. 28 February.

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Calendar and recipe book

Special offer… last few 2019 calendars now £5.

Order here

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

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 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

AGSD-UK member Charlie Power is now famous!

Feb 15, 2019

Charlie appeared in the newspaper of the Queen Elizabeth Hospital Birmingham. Here is his story, reprinted from news@uhb.

McArdle’s service seeks a Clinical Fellow

Feb 9, 2019

The McArdle disease and related disorders service, National Hospital for Neurology and Neurosurgery in London, is recruiting a Clinical Fellow.

Amici! 101 Tips for Pompe now in Italian

Feb 1, 2019

Congratulations to Martina on her degree in translation. Her final project was translating 101 Tips for Pompe into Italian.

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.

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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.