Share4Rare: Social media platform dedicated to rare diseases, using collective intelligence for the generation of awareness and advanced knowledge on this large group of diseases
A disease is called rare when it affects less than 5 in 10.000 persons. Knowing this number, it is easy to think that patients affected by a rare disease have to cope with isolation, reduced therapeutic options, long time for the diagnosis. And their families have to face the same isolation and a hard 24/7 care.
Nevertheless, there are other numbers that may help to give a different perspective. For example, the number of known rare diseases is likely to be between 6.000 and 8.000. This means that 1 in 17 people are affected by a rare disease, so that, about 30 millions of people deal with a rare disease only in the European Union.
Share4Rare (S4R) is a collective online platform that wants to improve the quality of life of patients and families affected by a rare disease through their active participation in generating and sharing scientific knowledge. In S4R, patients and families are in direct contact with researchers and clinicians, acting themselves as researchers of their own disease. Moreover, they can share their experiences with other people in the same situation and stay in contact with them.
Project lifetime: Jan 2018 – end of Jan 2020