Twin boys born with GSD1a and 8 year old big sister Amy organised a school Fun Run to help fund research.
The Royal College of Paediatrics and Child Health invites young people to network with each other, support groups, medical professionals and policy makers.
Dates for 2019 – families with children affected by hepatic GSDs can access children’s camps through the Children’s Liver Disease Foundation.
The Neuromuscular Centre at Winsford, Cheshire, is holding an Open Day on Thursday 20 June. Of special interest for muscle GSDs.
Thanks to the Pompe Support Team and other hosts, successful get-togethers were held around the UK to celebrate International Pompe Day.