RCPCH &Us have a survey for children & young people aged 13-25, who have a rare disease & live in the UK.
We are sad to report that AGSD-UK member Aldwyn Cooper has passed away.
The John Walton Muscular Dystrophy Research Centre in Newcastle is running a new study in Pompe disease.
2 days to go until Rare Disease Day 2021.
Eurordis key findings from a survey on patients’ and carers’
experience of medical care for their rare diseases.
The Pompe Support Team wanted to create a fun opportunity for children, as a show of support during lockdown.