Support is available through our GSD0 coordinator and our social media. Also, we have a some links to further information.
The coordinator is Abbie Maguire. Abbie became the GSD0 coordinator in 2015. She is studying for a PhD in neuroscience. She joined AGSD-UK to help people when they ask “What is wrong with me?” She feels it is an honour to be involved in such a fantastic support network, full of very brave individuals and that we can all beat this disease in our own way.
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
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
Map of people with ketotic GSDs
We maintain a map of people in the UK affected by the ketotic GSDs, including GSD0, 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.