RARE DISEASE DAY
The objective of Rare Disease Day is to raise awareness about rare diseases and their impact on the lives of patients.
It is always the last day of February, so usually the 28th and in leap years it is the 29th. On and around this day hundreds of patient organizations from countries and regions all over the world will hold awareness-raising activities.
Rare Disease Day is for EVERYONE - patients, family members, friends, clinicians, researchers, and policy makers.
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.
SHARE YOUR STORY
Share your story with family and friends to help raise awareness of how living with a muscle GSD affects you. You can upload a few photos or even share a short video.