CAMPAIGN 5

CONTRIBUTING TO RESEARCH

THE ISSUE
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.
OUR GOAL

To contribute to the planning of research projects and to support and assist those projects.

 

OUR OBJECTIVES

We will work towards our goal by:

  1. Collaborating with researchers on translational research projects. 

  2. Promoting patient involvement in patient registries (Euromac and CoRDS).

  3. Participating in committees that are responsible for research decision-making.

  4. Disseminating information about research to patients and family members. 

  5. Providing funding to researchers.

What is IamGSD?

We are a patient-led international group encouraging efforts by research and medical professionals, national support groups and individual patients worldwide.

What is Muscle GSD?

Human bodies make glucose from carbohydrates. Excess glucose is stored as glycogen in our muscles and liver. Muscle glycogen storage disease is when our muscles cannot convert their glycogen back into glucose to power our muscles.

Muscle GSDs links
If you have another muscle GSD please contact us.

Site updated: 07/2020.

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