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!
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
arij sees hope
Jalany - Morocco
Retinitis pigmentosa
 HELLO  we discovered that My daughter SHE 3 YEARS 10 MONTH S her vision is very weak. We made glasses but it is not improved, we did the reeducation the wild oculusion. I inform The ophthalmologist she
GCT and Me
Laura - United Kingdom
Giant cell tumor of bone
In september of 2017 i attended my football club for a normal training session which ended pretty badly as i landed in a pretty bad tackle and my ankle twisted and popped. my mum took me to the hospital