There is good support from our GSD3 coordinator, the Cori Action Team Support (CATS) and the GSD3 social media channel.
Here are some more ideas about sources of help and support.
Children’s Liver Disease Foundation 
Visit
Local Citizen’s Advice Bureau Visit
Genetic Alliance and Rare Diseases UK Visit
Muscular Dystrophy UKVisit
Regional Neuromuscular Centres
Locate your regional NHS neuromuscular centre for a referral and/or advice