Introducing our GSD6 coordinator and support from AGSD-UK, directly and via our social media.
GSD 6 Coordinator
The AGSD-UK Coordinator for GSD6 is Caroline Calder, who has the condition herself. (This is a voluntary role.) Everyone in the UK diagnosed with GSD6 should register with Caroline 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
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 GSD6, 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.