Pompe Support Network

Pompe Support Network

Based in the United Kingdom, we are a network of individuals, families, scientists, and healthcare professionals who aim to improve the lives of all people living and working with Pompe disease. The network is run by members of the Pompe community, for the benefit of the Pompe community. Membership is free and creates a number of distinct opportunities:

Influence and support research into safe, effective and affordable therapies

Advocate for access to therapies or medical devices for individuals living with Pompe disease

Facilitate and finance community sub-groups to share experience and manage projects to improve the physical and mental wellbeing of the Pompe community.

COVID-19 Updates and Support are posted in our dedicated COVID-19 section