VASCERN News
23 July 2024
Revision of Rare Vascular Tumors in the Orphanet Database
A new rare disease project, called Share4Rare, has just been launched! This project, funded by a Horizon2020 grant from the European Commission, is a digital platform that aims build a virtual community that allows rare disease patients, carers, clinicians and researchers to join forces.
Their goal: ” Create the largest community of patients and parents linked to rare diseases, in order to promote mutual support and future research initiatives in a safe environment.”
The platform will allow patients and their families from around the world to share their knowledge with their peers and reduce the isolation associated with rare diseases. It will also give them the opportunity to donate clinical data (in a secure and private environment), with which new research projects could be promoted. The Share4Rare platform is open to adult patients and caregivers of paediatric patients with any type of rare disease.
To learn more about Share4rare, including their 9 work packages, visit their website here
For registration to the Share4Rare platform, click here