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Share4Rare - Améliorer la qualité de vie des personnes atteintes d'une maladie rare
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Share4Rare - Améliorer la qualité de vie des personnes atteintes d'une maladie rare

Share4Rare - Plate-forme de médias sociaux consacrée aux maladies rares, qui utilise l'intelligence collective pour sensibiliser le public et faire progresser les connaissances.

Année :2018

Integrating Childhood Cancer Survivors Into Working Life

No one is alone in Share4Rare. The EU-funded project (Grant Agreement 780262) is building a community to gather patients, carers, clinicians and researchers to join forces and make a difference in rare diseases, such as childhood cancer. By working together, the community aims to transform rare diseases into known diseases by advancing research and sharing knowledge. The vision is to improve patients’ lives by promoting better science with a mission to boost research in rare diseases through new knowledge generated from connecting patients, carers and researchers.

The Share4Rare platform is a safe space where patients and carers can connect, share knowledge and get involved in scientific research. Rare diseases research is usually hampered by the few number of patients and geographic and language barriers. Importantly, the Share4Rare platform allows patients to get involved from anywhere in the world, connect with people like them and push together to advance research. Anyone can join the community to create awareness, empower patients and their carers and foster science for social change.

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