Lookig to the long term.

To enhance the quality of life of people affected by muscle glycogen storage disease.

Taking the long view on a walking course in Wales



To connect, educate, and support patients, clinicians, and researchers across all borders.

Across all borders of GSD, age and country on a walking course in California


The board of trustees has set these objectives. They are ambitious and long term, and they guide our activities from year to year. You will see these reflected in our campaigns.

All working together – walking course in California

  • Raise awareness amongst the medical profession, schools, sports clubs, and other relevant groups.
  • Provide support for patients, organizations and medical professionals.
  • Advocate the patient viewpoint and needs to governments, patient organizations and medical professionals.
  • Disseminate standards and best practice.
  • Contribute to the planning of research projects and to support and assist those projects.
  • Facilitate communications between organizations, especially internationally.
  • Work towards reducing the average age of diagnosis to age 10.