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GSD9

Information & Support

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

GSD9 coordinator

Dan MachinThe 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.

Visit Vitaflo’s “GSD and Me” web site.