Details of a comprehensive booklet to guide parents of children affected by GSD9, and an excellent web site for more information.
Hepatic GSD guide for parents and carers
This very useful 24 page booklet has been written by staff of the Evelina Children's Hospital in London. It covers five of the hepatic GSDs - 1 (both 1a and 1b), 3 (both 3a and 3b), 6, 9 (except 9d) and 0 (liver type).
It has straightforward explanations of subjects such as metabolism, the sources of glucose and inheritance. It goes onto deal with each of the hepatic GSDs covered with advice on feeding, travelling, schooldays, etc.
Make sure you have your copy
Ask for your copy during your appointment at the Evelina. Or if you don't attend the Evelina, ask for a copy from AGSD-UK.
PDF copy available
In a hurry, or would like an electronic copy to keep to hand on your tablet or smartphone? A PDF version is available thanks to the Evelina London Children’s Hospital. (5mb file.)