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Information starts here

Helping you to find the information you need… patient, carer, family, friend or employer, if you are affected by Glycogen Storage Disease help is at hand. These links will take you to the information you need.

Newly diagnosed?

Read our brief introduction “What is Glycogen Storage Disease”. That page will then take you on to the list of GSD variants so that you can access our information section on the particular GSD which you are are affected by. Whatever your question, it matters to you so it matters to us too. If the answer is not there, please contact us.

Our introduction to Glycogen Storage Disease.

Make contact with those with experience

Contact the GSD Coordinator who has the same condition or they care for family members who have it. Then meet with others with experience of your GSD. Contact us, we’ll try to find someone local or in a similar situation and, with their permission only, connect you.

Find the page for your GSD and contact the coordinator.

There are so few people with my condition

Having a rare condition can feel very isolating so find out more about meetings, conferences and events. Often members say to us, “This is one the place I come where I do not have to explain my condition”. What information is there to help me? .

Conferences for professionals and those affected by GSD.

We also have a range of different events at which you can meet others with GSD – for example: Family Days, Kids’ Camps, Children & Parents events, and Walking Courses.

Read about our events here.

What information is available?

Check our leaflets, publications and other resources. Our information is written or compiled by members and professionally reviewed, so it is reliable. Past newsletters contain a wealth of knowledge, stories and guidance collated over years.

Details of our books, booklets and leaflets about GSD.

Register with or join AGSD-UK

We are your community. We respond to your needs. We campaign for you. AGSD-UK is the only organisation created by and for people with any GSD. The founders, most trustees, staff and volunteers are closely affected by this rare condition. Join us and you will have a voice speaking up for you in the important places.

Keep in touch by registering with AGSD-UK.