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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.

Call for proposal

H2020-ICT-2016-2017

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Sub call

H2020-ICT-2017-1

Coordinator

FUNDACIO PRIVADA PER A LA RECERCA I LA DOCENCIA SANT JOAN DE DEU
Net EU contribution
€ 425 437,50
Address
Santa Rosa 39-4
08950 Esplugues De Llobregat
Spain

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Region
Este Cataluña Barcelona
Activity type
Research Organisations
Non-EU contribution
€ 0,00

Participants (10)

Third-party

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.

HOSPITAL SANT JOAN DE DÉU
Spain
Net EU contribution
€ 131 250,00
Address
Paseo Sant Joan De Deu 2
08950 Esplugues De Llobregat

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Region
Este Cataluña Barcelona
Activity type
Research Organisations
Non-EU contribution
€ 0,00
UNIVERSITAT POLITECNICA DE CATALUNYA
Spain
Net EU contribution
€ 186 250,00
Address
Calle Jordi Girona 31
08034 Barcelona

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Region
Este Cataluña Barcelona
Activity type
Higher or Secondary Education Establishments
Non-EU contribution
€ 0,00
OMADA INTERACTIVA SLL
Spain
Net EU contribution
€ 269 087,50
Address
Ausias Marc 26 Planta 4, Despatx 40
08010 Barcelona

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SME

The organization defined itself as SME (small and medium-sized enterprise) at the time the Grant Agreement was signed.

Yes
Region
Este Cataluña Barcelona
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
Non-EU contribution
€ 115 323,23
STICHTING UNITED PARENT PROJECTS MUSCULAR DYSTROPHY
Netherlands
Net EU contribution
€ 182 512,50
Address
Koninginnelaan 69
3905 GG Veenendaal

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Region
West-Nederland Utrecht Utrecht
Activity type
Other
Non-EU contribution
€ 0,00
MELANOMA PATIENT NETWORK EUROPE
Sweden
Net EU contribution
€ 184 300,00
Address
Fjallbo Selkna 152
75597 Uppsala

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Region
Östra Sverige Östra Mellansverige Uppsala län
Activity type
Other
Non-EU contribution
€ 0,00
UNIVERSITY OF NEWCASTLE UPON TYNE
United Kingdom
Net EU contribution
€ 175 000,00
Address
Kings Gate
NE1 7RU Newcastle Upon Tyne

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Region
North East (England) Northumberland and Tyne and Wear Tyneside
Activity type
Higher or Secondary Education Establishments
Non-EU contribution
€ 0,00
THE SYNERGIST
Belgium
Net EU contribution
€ 70 014,50
Address
Avenue Louise 523
1050 Bruxelles

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SME

The organization defined itself as SME (small and medium-sized enterprise) at the time the Grant Agreement was signed.

Yes
Region
Région de Bruxelles-Capitale/Brussels Hoofdstedelijk Gewest Région de Bruxelles-Capitale/ Brussels Hoofdstedelijk Gewest Arr. de Bruxelles-Capitale/Arr. Brussel-Hoofdstad
Activity type
Other
Non-EU contribution
€ 0,00
Third-party

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.

SYNERGIST SERVICES
Belgium
Net EU contribution
€ 202 735,50
Address
Avenue Louise 523
1050 Bruxelles

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SME

The organization defined itself as SME (small and medium-sized enterprise) at the time the Grant Agreement was signed.

Yes
Region
Région de Bruxelles-Capitale/Brussels Hoofdstedelijk Gewest Région de Bruxelles-Capitale/ Brussels Hoofdstedelijk Gewest Arr. de Bruxelles-Capitale/Arr. Brussel-Hoofdstad
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
Non-EU contribution
€ 86 886,64
ASSERTA GLOBAL HEALTHCARE SOLUTIONS
Spain
Net EU contribution
€ 50 268,75
Address
Ronda Maiols 1, Oficina 303, Edificio Bmc
08912 Sant Quirze Del Valles

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Region
Este Cataluña Barcelona
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
Non-EU contribution
€ 21 543,75
CLICLAB TRANSFORMATIVE AGENT SL
Spain
Net EU contribution
€ 45 106,25
Address
C/llibertat 11 Puerta 1
08012 Barcelona

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SME

The organization defined itself as SME (small and medium-sized enterprise) at the time the Grant Agreement was signed.

Yes
Region
Este Cataluña Barcelona
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
Non-EU contribution
€ 19 331,25