Patient involvement is the key to effective research for rare diseases
28 february
Rare diseases heard day 2016 29 february Only 100 days remaining
Rare diseases heard day 2016 29 february Only 100 days remaining
Rare diseases heard day 2016 29 february Only 100 days remaining
2018 events
Tell your story!
One of a kind
Ellen - United States
Rpl10
My son Evan wasn't diagnosed till he was almost 5 years old with a rare genetic condition called RPL 10. I've come to find out the we are the only family to have this genetic condition. I've watched my
Family is everything
Karen - United States
Homocystinuria due to cystathionine beta-synthase deficiency
My husband, Mark and I have been together for 34 years! We grew up a mile from each other and met in high school.  We got married in 1989 and had our first child, Benjamin in June of 1991.  Benjamin was
My EF Story
Lauren - United States
Eosinophilic fasciitis
I always thought I was pretty healthy. I ate well for the most part, felt great, and doctor’s appointments always well. I never would have imagined that I would be diagnosed with a rare disease that would