Project description
Innovative awareness platform for rare diseases stakeholders
Rare diseases currently affect 3.5 % to 5.9 % of the world’s population and exhibit a wide range of symptoms that vary among patients. As a result, there is a scarcity of medical expertise and limited research in this field. The EU-funded SHARE4RARE project aims to establish a collective awareness platform for patients, caregivers, researchers, and other stakeholders involved in the healthcare of rare diseases. This project will use a socially innovative approach, drawing on citizen science and collective intelligence, to enhance the quality of life, disease management, and scientific knowledge accumulation. SHARE4RARE will create a platform that revolves around care, education and research by leveraging existing knowledge and initiatives while also providing a space for discussion, collaboration, and further research.
Objective
Share4Rare is a collective awareness platform of patients, caregivers, researchers and other stakeholders involved in the Healthcare of Rare Diseases (RD). Based on a socially innovative approach, and building on citizen science and collective intelligence, we will engage and connect all the relevant stakeholders, towards the improvement of the quality of life, the management and the collection of scientific knowledge. The platform will be built around three important pillars: care, education and research. Our Collective Awareness Platform will take advantage of the high-motivated group of citizens (from patients to researchers, from volunteers to public health representatives and health professionals) linked or not to rare diseases, and their expertise. It will build on existing knowledge and initiatives, and will ensure a space for debate and co-creation, and a space for further research. S4R will be based on the shared open data, and on the priorities set collectively. Collective intelligence from patients and families, democratic and transparent participation and a secure environment focused on three layers of interaction will ensure a platform to put in value citizen science that is needed to promote new research initiatives with a patient centred approach.
Fields of science
Programme(s)
Funding Scheme
IA - Innovation actionCoordinator
08950 Esplugues De Llobregat
Spain