A rare disease affects less than 5 in 10.000 persons, and the 50% of them are children. Keeping this number in mind, it is easy to imagine that rare disease patients and their families have to cope with delayed diagnosis, fewer therapeutic options and isolation in addition to their disease.
At the same time, we know between 6000 and 8000 rare diseases today- which means that being rare is far from rare! 1 in 17 people are affected by a rare disease and this means that 30 million Europeans are living with a rare condition today.
Share4Rare is a collective online platform with the ambition to make a difference for rare disease patients and their families. In the enabling S4R environment, patients and families are in direct contact with researchers and clinicians to become researchers of their own disease. Interactive platforms will break isolation and allow learning across rare conditions, so that being rare no longer means being alone.
S4R stems from the awareness that real progress, especially in a rare disease, requires sharing: sharing of knowledge, sharing of experiences, sharing of clinical data and the hope of making a lasting contribution to the collective effort of helping children with rare conditions!
This project has received funding from European Union’s Horizon 2020 programme under Grant Agreement 780262