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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.

Field of science

  • /medical and health sciences/health sciences/public and environmental health

Call for proposal

H2020-ICT-2017-1
See other projects for this call

Funding Scheme

IA - Innovation action

Coordinator

FUNDACIO SANT JOAN DE DEU
Address
Calle Santa Rosa, 39-57
08950 Esplugues De Llobregat
Spain
Activity type
Research Organisations
EU contribution
€ 556 687,50

Participants (8)

UNIVERSITAT POLITECNICA DE CATALUNYA
Spain
EU contribution
€ 186 250
Address
Calle Jordi Girona 31
08034 Barcelona
Activity type
Higher or Secondary Education Establishments
OMADA INTERACTIVA SLL
Spain
EU contribution
€ 269 087,50
Address
Ausias Marc 26 Planta 4, Despatx 40
08010 Barcelona
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
STICHTING UNITED PARENT PROJECTS MUSCULAR DYSTROPHY
Netherlands
EU contribution
€ 182 512,50
Address
Koninginnelaan 69
3905 GG Veenendaal
Activity type
Other
MELANOMA PATIENT NETWORK EUROPE
Sweden
EU contribution
€ 184 300
Address
Fjallbo Selkna 152
75597 Uppsala
Activity type
Other
UNIVERSITY OF NEWCASTLE UPON TYNE
United Kingdom
EU contribution
€ 175 000
Address
Kings Gate
NE1 7RU Newcastle Upon Tyne
Activity type
Higher or Secondary Education Establishments
THE SYNERGIST
Belgium
EU contribution
€ 272 750
Address
Avenue Louise 523
1050 Bruxelles
Activity type
Other
ASSERTA GLOBAL HEALTHCARE SOLUTIONS
Spain
EU contribution
€ 50 268,75
Address
Ronda Maiols 1, Oficina 303, Edificio Bmc
08912 Sant Quirze Del Valles
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
CLICLAB TRANSFORMATIVE AGENT SL
Spain
EU contribution
€ 45 106,25
Address
C/llibertat 11 Puerta 1
08012 Barcelona
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)