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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Register with us for special access to the web site, download PDFs and be kept in touch by email.


We have a series of interactive maps of different parts of the world showing the approximate location of patients, parents and professionals. You can zoom and search on the maps. The map pins are anonymous unless you ask us to add your details.

These maps are generated from our database. There is not a pin on the map for everyone because:

  1. Some people have not requested to be included.

  2. Some people are in families and are located at the same address.

  3. In some cases we do not have a postal address, just the region, and these pins will all appear on top of each other in the center of their region.


Although there often appears to be a cluster of cases, in fact these usually simply mirror the concentrations of the general population.


If you would like to be added please use the “Contact us” form to send in request with your full name and full postal address and let us know if you would like your name, email address or Facebook name included. We will add you in the next update.