Meet our GSD9 coordinator, plus we have some links for you.
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.
You can contact Dan via our “Message us” page.
AGSD-UK social media
Don’t forget that AGSD-UK has it’s own Facebook Page and a Twitter account. Click on the icons in the page footer, or go to our Social Media page.
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.
“GSD and Me” web site
Vitaflo have a web resource for people affected by the liver GSDs. It describes five of the most common hepatic GSDs (0, 1, 3, 6 and 9). It provides useful advice on dietary control and exercise, as well as sections on school, employment and travel.
