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SHARE4RARE SIGNED

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

Total Cost €

EC-Contrib. €

Partnership

Views

Outcomes and
results

SHARE4RARE project word cloud

Explore the words cloud of the SHARE4RARE project. It provides you a very rough idea of what is the project "SHARE4RARE" about.

linked will innovative science patient transparent democratic share4rare engage data creation socially collection volunteers families professionals centred quality pillars rd diseases interaction space layers platform motivated put connect environment advantage building collective patients collectively improvement citizens co expertise caregivers intelligence care priorities scientific stakeholders rare shared life healthcare participation health citizen group s4r public education secure

Project "SHARE4RARE" data sheet

The following table provides information about the project.

Coordinator	FUNDACIO SANT JOAN DE DEU Organization address address: Calle Santa Rosa, 39-57 city: Esplugues de Llobregat postcode: 8950 website: www.fsjd.org contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.
Coordinator Country	Spain [ES]
Project website	http://www.share4rare.org
Total cost	2˙144˙904 €
EC max contribution	1˙921˙962 € (90%)
Programme	1. H2020-EU.2.1.1. (INDUSTRIAL LEADERSHIP - Leadership in enabling and industrial technologies - Information and Communication Technologies (ICT))
Code Call	H2020-ICT-2017-1
Funding Scheme	IA
Starting year	2018
Duration (year-month-day)	from 2018-01-01 to 2020-12-31

Partnership

Take a look of project's partnership.

#	participants	country	role	EC contrib. [€]
1	FUNDACIO SANT JOAN DE DEU FUNDACIO SANT JOAN DE DEU Organization address address: Calle Santa Rosa, 39-57 city: Esplugues de Llobregat postcode: 8950 website: www.fsjd.org contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	ES (Esplugues de Llobregat)	coordinator	562˙500.00
2	OMADA INTERACTIVA SLL OMADA INTERACTIVA SLL Organization address address: AUSIAS MARC 26 PLANTA 4, DESPATX 40 city: BARCELONA postcode: 8010 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	ES (BARCELONA)	participant	246˙837.00
3	THE SYNERGIST THE SYNERGIST Organization address address: AVENUE LOUISE 523 city: BRUXELLES postcode: 1050 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	BE (BRUXELLES)	participant	241˙000.00
4	STICHTING UNITED PARENT PROJECTS MUSCULAR DYSTROPHY STICHTING UNITED PARENT PROJECTS MUSCULAR DYSTROPHY Organization address address: KONINGINNELAAN 69 city: VEENENDAAL postcode: 3905 GG website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	NL (VEENENDAAL)	participant	208˙500.00
5	MELANOMA PATIENT NETWORK EUROPE MELANOMA PATIENT NETWORK EUROPE Organization address address: FJALLBO SELKNA 152 city: UPPSALA postcode: 75597 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	SE (UPPSALA)	participant	198˙750.00
6	UNIVERSITAT POLITECNICA DE CATALUNYA UNIVERSITAT POLITECNICA DE CATALUNYA Organization address address: CALLE JORDI GIRONA 31 city: BARCELONA postcode: 8034 website: www.upc.edu contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	ES (BARCELONA)	participant	187˙500.00
7	UNIVERSITY OF NEWCASTLE UPON TYNE UNIVERSITY OF NEWCASTLE UPON TYNE Organization address address: KINGS GATE city: NEWCASTLE UPON TYNE postcode: NE1 7RU website: http://www.ncl.ac.uk/ contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	UK (NEWCASTLE UPON TYNE)	participant	176˙250.00
8	ASSERTA GLOBAL HEALTHCARE SOLUTIONS ASSERTA GLOBAL HEALTHCARE SOLUTIONS Organization address address: RONDA MAIOLS 1, OFICINA 303, EDIFICIO BMC city: SANT QUIRZE DEL VALLES postcode: 8912 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	ES (SANT QUIRZE DEL VALLES)	participant	100˙625.00

Map

Project 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.

Deliverables

List of deliverables.
Guidelines about the structure of the communities: layers, contents and interactions.	Other	2019-10-15 13:13:29
Interim report to European Commission	Documents, reports	2019-10-15 13:13:29
Guidelines for the content development for the public layer of Share4Rare	Other	2019-10-08 17:17:18
Report with the rules about privacy and access implemented in the platform	Documents, reports	2019-10-08 17:17:15
Share4Rare platform	Other	2019-10-08 17:17:09
Toolkit for patient advocacy	Other	2019-10-08 17:17:18
Guidelines for the content development for the awareness and empowerment communities of Share4Rare.	Other	2019-10-08 17:17:13
Report about the roles and permissions of the different users.	Documents, reports	2019-10-08 17:17:21
Guidelines for the creation and management of every type of communities.	Other	2019-10-08 17:17:25
Report about the patients\' involvement to generate citizen science on rare diseases.	Documents, reports	2019-10-08 17:17:16
Co-development model and guidelines	Other	2019-10-08 17:17:27
Report of the conceptual design of the CAPS	Documents, reports	2019-10-08 17:17:24
Report with the configuration and working rules of the Editorial Review Committee.	Documents, reports	2019-10-08 17:17:22
Dissemination and communication plan	Documents, reports	2019-10-08 17:17:16
Protection of Personal Data (POPD) report	Documents, reports	2019-10-08 17:17:20
Data Management Plan	Open Research Data Pilot	2019-10-08 17:17:16

Take a look to the deliverables list in detail: detailed list of SHARE4RARE deliverables.

Are you the coordinator (or a participant) of this project? Plaese send me more information about the "SHARE4RARE" project.

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Send me an email (fabio@fabiodisconzi.com) and I put them in your project's page as son as possible.

Thanks. And then put a link of this page into your project's website.

The information about "SHARE4RARE" are provided by the European Opendata Portal: CORDIS opendata.