Based on a socially innovative approach, and building on citizen science and collective intelligence, the Share4Rare Project will engage and connect all relevant stakeholders towards improving quality of life, disease management and collection of scientific knowledge and data on rare diseases.
The project is funded by the European Union’s Horizon 2020 research and innovation programme and will be coordinated by Sant Joan de Déu Foundation.
The platform will be built around three important pillars:
Education, Sharing and Research.
Share4Rare (S4R) will take advantage of the highly-motivated group of citizens (from patients to researchers, volunteers to public health representatives and health professionals) linked directly or not to rare diseases, and their expertise. It will build on existing knowledge and initiatives, and will ensure a space for debate, co-creation, and further research through shared data and a patient centered approach.
As coordinators of the Neuromuscular ERN we are delighted that staff based at the John Walton Muscular Dystrophy Research Centre will be involved in both projects. We anticipate that we will be able to not only provide that all important ‘bridge’ between the two projects but also build upon our existing communication channels to ensure we reach everyone connected with the neuromuscular field and beyond!