AGSD-UK supported Findacure’s networking event on rare diseases in Cambridge, represented by Gemma Seyfang of the Pompe Support Team.
Families attending Great Ormond Street or Birmingham Children’s hospitals are welcome to come along to family days this autumn.
Children and families from North East England got together for a Family Fun Day at the Royal Victoria Infirmary, Newcastle.
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.