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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HELP TO RAISE AWARENESS ON
RARE DISEASE DAY

 An annual event coordinated by EURORDIS.
Get ready for February 29th 2020!
Hundreds of patient organizations from all over the world help to raise awareness.

It’s here! Rare Disease Day, February 29!

Read about our three big launches.

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THE OBJECTIVE

The objective of Rare Disease Day is to raise awareness about rare diseases and their impact on the lives of patients.

 

For 2020, February 29th will be the 13th international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organizations from countries and regions all over the world will hold awareness-raising activities.  

GET INVOLVED

Rare Disease Day is for EVERYONE - patients, family members, friends, clinicians, researchers, and policy makers.

 

To acknowledge Rare Disease Day, IamGSD has set out two campaigns:

1. Patient Registry

To learn more about how living with a Muscle GSD impacts you, IamGSD has partnered with Sanford Health to develop a Muscle GSD patient-registry.  IamGSD will launch the registry on Rare Disease Day. Links to the patient-registry will be made available on February 29th HERE and on Facebook.

2. Get Moving

The #GETMOVING campaign simply aims to encourage and support all individuals with a muscle GSD to #GetMoving. This campaign will begin on February 29th and run for 11 weeks. All you have to do is take that first step and #GetMoving – a few steps, a few blocks, or a few miles each day! 

We look forward to hearing how YOU #GetMoving.

TELL YOUR STORY

Share your story with family and friends to help raise awareness of how living with a muscle GSD affects you.

SHARE YOUR PHOTOS

Share your photos to show your solidarity with the rest of the world for Rare Disease Day by using the hashtags - #RareDiseaseDay and #GetMoving.