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Sharing knowledge, time and experiences to tackle the isolation of rare disease

Share4Rare is a collaborative platform supporting young people living with rare diseases. 

Rare diseases are classified as those which affect less than 5 in 10,000 people. Because of their rarity, patients and their families have to cope not just with the challenges of the diseases but also with delayed diagnosis, lack of therapies and medicine, and isolation. At the same time, with between 6,000 and 8,000 known rare diseases today, some 30 million people in Europe alone are living with them.

Share4Rare (S4R), funded by the European Union’s Horizon 2020 programme, is a collective online platform built upon the understanding that real progress, especially in a rare disease, requires sharing: sharing of knowledge, sharing of experiences, and sharing of data. The project aims to support rare disease patients and their families by facilitating new interactions between patients, families, doctors, researchers and other stakeholders, taking advantage of digital technology’s ability to connect people all across the world.

In turn, this will reduce isolation as well as facilitate research and clinical advances. The aim is that for those affected, being rare no longer means being alone.

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