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!
Brandon's Wish
Brandon - United Kingdom
It started with nosebleeds when Brandon was three years old, too heavy and too often to be normal for a young child. Then rashes started coming up, and other symptoms started creeping in; joint pain, weight
Unusual illnesses
Howard coleman - United Kingdom
I am now 72 at the age of 4 I had menegitis which has left me with many problems mainly memory my school days where hard and had to have extra lessons to get me on the road albeit not perfect my working
Challenge with Crouzon
Tri Tran - Vietnam
Dung was born in 2010 with Crouzon syndrome since new born. We were very surprised when hearing this such syndrome that was the first time we have to face. When my childhood, we were in severe difficulty