Meet our GSD9 coordinator, plus we have some links for you.
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.
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.