Join us in making the voice of Rare diseases heard
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
2017 events
Tell your story!
Still Undiagnosed
Hannah - United States
Since 2013, I have had many problems and remain undiagnosed. My liver levels go up extremely high intermittently, I suffer from extreme fatigue, and today I had my first seizure. I've had CTs, MRIs, biopsies,
Figured myself out
Eliza Riley - Afghanistan
I was born and diagnosed with cerebral palsy. It wasn't until last year that I demanded to be put on a dopa drug. It amazingly worked and then stopped. I demanded to see someone who knows this dopa drug.
My Life With Ehlers Danlos
Chloe - United Kingdom
Hello my name is Chloe and i am seventeen years old and i have Ehlers Danlos Syndrome (EDS) EDS is a rare genetic connective tissue disorder what effects many aspects of the body i can go from being relatively