February 28, 2021 is the 14th international Rare Disease Day, coordinated by EURORDIS. On the last day of February, hundreds of patient organizations from countries and regions all over the world will hold awareness-raising activities.
I have Pompe, a genetic disease. Pompe disease is a rare (estimated at 1 in every 40,000 births), inherited and usually fatal neuromuscular disorder.
We face many challenges. Some are cultural. For example, one night I parked my car on the street to go to a seminar. When I returned, someone had taken a crowbar and smashed my window and removed my disability parking placard.Read more on themighty.com