Meet our GSD9 coordinator, plus details of social media and we have some links for you to further information.
GSD9 coordinator
The AGSD-UK Coordinator for GSD9 is Dan Machin, who has a son with the condition. (This is a voluntary role.) Everyone in the UK diagnosed with GSD9 should register with Dan to be kept up-to-date with developments.
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
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
Map of people with ketotic GSDs
We maintain a map of people in the UK affected by the ketotic GSDs, including GSD9, 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 page for more details, or contact the Coordinator.