The top eleven questions that patients, families and healthcare professionals want to be addressed in liver storage disease by researchers.
RCPCH &Us have a survey for children & young people aged 13-25, who have a rare disease & live in the UK.
The Pompe Support Team wanted to create a fun opportunity for children, as a show of support during lockdown.
Over the next few months AGSD-UK is offering a series of talks and presentations which will be uploaded each Monday
Has your child been diagnosed with Juvenile Myoclonic Epilepsy?
AGSD-UK has teamed up with Vitaflo to learn more about how you live with liver GSD