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
2019 events
Tell your story!
Living with Cutis Marmorata
Barbara - United States
Cutis Marmorata Telangiectatica Congenita
Six year old Ella, the daughter of Britney, represents the many children in southern Illinois who receive services through TLC.Ella was born with an extremely rare syndrome called "m-cm" or "m-cap". Ella
THE RARE MATCH
Matteo - Italy
EEC syndrome
I love soccer and I owe it so much. I am affected by a rare disease and, unfortunately I have never had the possibility to see my first child to be born, due to the same syndrome I have.  In order to give
Nothing is Impossible
Matina - Greece
Mutation of 2 Genes: CAV 3 - RYR 1 )
My name is Matina, I am 46 years old, I am married , I am a mother of three children, grandmother of 2 grandchildren and I also have a dog. I suffer from a rare disease. At the age of 40, my health problems