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.
Julie Garfield has been making bag tags for Pompe children to go back to school.
For the AGSD-UK Family Day at Great Ormond Street, lots of families came along and friendships and support networks were created.
Ismail lives with Infantile Onset Pompe Disease. Aged 19, his abiding passion is football. He plays using an adapted wheelchair.
Families attending Great Ormond Street or Birmingham Children’s hospitals are welcome to come along to family days this autumn.