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: March 2020.

© IamGSD 2017 – 2020.

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CAMPAIGN 2

HELPING PATIENTS TO UNDERSTAND

THE ISSUE
Patients who understand the concepts behind their condition and have learnt how to manage well, have a significantly improved quality of life.
Conversely, those who have not had the opportunity to grasp the fundamentals can experience persistent pain, be frequently hospitalized, accumulate muscle damage, suffer deterioration in their condition, experience psychological issues and develop concomitant conditions.
OUR GOAL

To achieve the education of people with a muscle GSD promptly after receiving their diagnosis. 

 

OUR OBJECTIVES

We will work towards our goal by:

  1. Publishing patient-focussed information for people diagnosed with a muscle GSD.

  2. Maintaining a high profile web site which an be easily found by people who are newly diagnosed, with reliable and up-to-date information.

  3. Operating social media channels for people with muscle GSDs and providing experienced Admins to monitor posts and provide appropriate guidance as necessary.

  4. Producing video and audio recordings explaining aspects of muscle GSD and its management.

  5. Running practical courses to help people understand and practice management techniques and expand their boundaries.

  6. Presenting at conferences and workshops to disseminate effective management techniques.