CONTRIBUTING TO RESEARCH
Clinical and epidemiological data on muscle GSDs is limited. With only a few clinicians worldwide seeing significant numbers of patients, research opportunities are limited.
There is a distinct requirement for establishing networks of patients and their families on an international basis, and ensuring that patients’ needs are fed into the discussions on the research agenda.
To contribute to the planning of research projects and to support and assist those projects.
We will work towards our goal by:
Collaborating with researchers on translational research projects.
Promoting patient involvement in patient registries (Euromac and CoRDS).
Participating in committees that are responsible for research decision-making.
Disseminating information about research to patients and family members.
Providing funding to researchers.