CORDIS
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CORDIS

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Social media platform dedicated to rare diseases, using collective intelligence for the generation of awareness and advanced knowledge on this large group of diseases.

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.

Coordinator

FUNDACIO SANT JOAN DE DEU

Address

Calle Santa Rosa, 39-57
08950 Esplugues De Llobregat

Spain

Activity type

Research Organisations

EU Contribution

€ 562 500

Participants (7)

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UNIVERSITAT POLITECNICA DE CATALUNYA

Spain

EU Contribution

€ 187 500

OMADA INTERACTIVA SLL

Spain

EU Contribution

€ 246 837,50

STICHTING UNITED PARENT PROJECTS MUSCULAR DYSTROPHY

Netherlands

EU Contribution

€ 208 500

MELANOMA PATIENT NETWORK EUROPE

Sweden

EU Contribution

€ 198 750

UNIVERSITY OF NEWCASTLE UPON TYNE

United Kingdom

EU Contribution

€ 176 250

THE SYNERGIST

Belgium

EU Contribution

€ 241 000

ASSERTA GLOBAL HEALTHCARE SOLUTIONS

Spain

EU Contribution

€ 100 625

Project information

Grant agreement ID: 780262

Status

Ongoing project

  • Start date

    1 January 2018

  • End date

    31 December 2020

Funded under:

H2020-EU.2.1.1.

  • Overall budget:

    € 2 144 904,50

  • EU contribution

    € 1 921 962,50

Coordinated by:

FUNDACIO SANT JOAN DE DEU

Spain