Community Groups

Community Groups

Community groups are central to everything that happens within the Pompe Support Network. Individual groups discuss their own experiences or share views on published research, news items, or anything related to the group's subject.

This section describes the current groups and their discussions, projects and proposals. We positively encourage suggestions for new groups that may lead to improvements in the health and wellbeing of the Pompe Community.

Because Pompe is so rare and still not fully understood, experience within the Pompe community is of critical importance. We are often asked for advice about living with the condition by companies developing therapies, and by researchers trying to develop guidelines for diet and exercise. So the knowledge we hold can also drive research and the development of such guidelines in many aspects of life.