In case you missed these web site developments.
We have introduced a number of new features on the web site this year. Here is the low down.
Amy’s school Fun Run for her brother Eric.
Twin boys born with GSD1a and 8 year old big sister Amy organised a school Fun Run to help fund research.
Big leap forward in genetic diagnosis of rare diseases.
Under a plan by the NHS Genomic Medicine Service, genome sequencing is set to revolutionise the diagnosis of rare childhood conditions.
Invitation to young people with a rare condition
The Royal College of Paediatrics and Child Health invites young people to network with each other, support groups, medical professionals and policy makers.
More personal stories wanted
AGSD-UK is appealing for more personal stories from all the GSDs. There is great value in the the stories for those who are newly diagnosed.
Camps available: Children’s Liver Disease Foundation
Dates for 2019 – families with children affected by hepatic GSDs can access children’s camps through the Children’s Liver Disease Foundation.