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Von Gierke Disease (GSD1)

Information & Support

A booklet for children with GSD1a, a map of affected people in the UK and some links of interest to those learning about GSD1.

GSD1 Coordinator

Jason became GSD1 coordinator as his daughter is diagnosed with GSD1b. Since her diagnosis the family has travelled extensively to find the experts and others with GSD to help them understand the best care plan for their daughter.

Medicine has always been an interest of Jason’s, and now out of necessity he has gained as much knowledge and understanding as possible to be better able to support his daughter and others.

He feels that having a child with a rare disease has given him a more real, more rich perspective on life that has helped make him a better person.

Jason would welcome people to contact him if they feel there is anything he can do to help.

If you feel you would like to get in touch you can contact Jason via the “Message us” form

Specialist Care Advisor

AGSD-UK specialist care advisor Elizabeth Davenport is available to help with all aspects of non-clinical support. She can offer a listening ear plus information and advocacy around a whole range of issues, including education, your rights at work, social care, transport, housing, and community grants, so you can get the support and services you need.

Don’t hesitate to contact Elizabeth by email

Contact Elizabeth by email.

Map of people affected by GSD1

We maintain a map of people in the UK affected by GSD1, to help facilitate finding peer-to-peer support when it is desired. You can ask to have your name and a choice of contact information added to the map.

Go to a new tab with the map for more details, or contact the Coordinator.

Benefits Advisor

AGSD-UK benefits advisor Zainib Hussain can help with applications and appeals for benefits such as universal credit, personal independence payment, disability living allowance/child disability payment, employment support allowance and carer’s allowance.

To discuss what you might be entitled to and for help with any claims, just email

Contact Zainib by email.

My GSD and me!

A 24 page illustrated booklet giving a child’s eye view of what is involved with living with GSD1a. By Dr Gabriella Clark, a junior doctor at the Royal Cornwall Hospital. She has had a longstanding interest in paediatric endocrinology since beign diagnosed with type 1 diabetes, and being inspired by a friend with GSD1a.

View the “My GSD and me!” booklet online and flick through the pages.

Download a PDF of the “My GSD and me!” booklet.

Or ask us to send you a printed copy, using the “Message us” form.