PROMOTE 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. Planning has now started for 2021.
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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 three campaigns, see below.

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.

 

OUR INITIATIVES

To promote Rare Disease Day on February 29th, 2020 we are launching these three initiatives:

1

IamGSD/CoRDS 
PATIENT REGISTRY

We are launching a new patient-entered registry for muscle GSDs, aimed mainly at North America. Be part of history, share your experience to help everyone in the future. The Registry is backed and operated by Sanford Research, the major non-profit research organisation. Read all about it on-line now.

2

GET MOVING

We launch our campaign to encourage, motivate, and support ALL individuals with McArdle’s to GET MOVING. Our campaign is for 11 weeks from rare Disease Day on February 29th to the start of our Activity Week on May 16th.

3

IamGSD CLOTHING

We have white T-Shirts, and light grey Sweatshirts and Hoodies all in a wide range of unisex sizes. Second wind slogan on the front, with IamGSD logo and web address on the back. We are using a website which the manufacturer uses to support non-profit fundraisers, but in our case we just want to break even on a bulk order. Closing date 23 March.

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: 10/2020.

© IamGSD 2017 – 2020.

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