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.
We are a community based organisation, and to make this all run smoothly, we've got some good people helping. Allow us to introduce the leadership team: