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
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Participants (10)
Legal entity other than a subcontractor which is affiliated or legally linked to a participant. The entity carries out work under the conditions laid down in the Grant Agreement, supplies goods or provides services for the action, but did not sign the Grant Agreement. A third party abides by the rules applicable to its related participant under the Grant Agreement with regard to eligibility of costs and control of expenditure.
08950 Esplugues De Llobregat
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08034 Barcelona
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08010 Barcelona
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The organization defined itself as SME (small and medium-sized enterprise) at the time the Grant Agreement was signed.
3905 GG Veenendaal
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75597 Uppsala
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NE1 7RU Newcastle Upon Tyne
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1050 Bruxelles
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The organization defined itself as SME (small and medium-sized enterprise) at the time the Grant Agreement was signed.
Legal entity other than a subcontractor which is affiliated or legally linked to a participant. The entity carries out work under the conditions laid down in the Grant Agreement, supplies goods or provides services for the action, but did not sign the Grant Agreement. A third party abides by the rules applicable to its related participant under the Grant Agreement with regard to eligibility of costs and control of expenditure.
1050 Bruxelles
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The organization defined itself as SME (small and medium-sized enterprise) at the time the Grant Agreement was signed.
08912 Sant Quirze Del Valles
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08012 Barcelona
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The organization defined itself as SME (small and medium-sized enterprise) at the time the Grant Agreement was signed.