Project description DEENESFRITPL Innovative awareness platform for rare diseases stakeholders Rare diseases currently affect 3.5 % to 5.9 % of the world’s population and exhibit a wide range of symptoms that vary among patients. As a result, there is a scarcity of medical expertise and limited research in this field. The EU-funded SHARE4RARE project aims to establish a collective awareness platform for patients, caregivers, researchers, and other stakeholders involved in the healthcare of rare diseases. This project will use a socially innovative approach, drawing on citizen science and collective intelligence, to enhance the quality of life, disease management, and scientific knowledge accumulation. SHARE4RARE will create a platform that revolves around care, education and research by leveraging existing knowledge and initiatives while also providing a space for discussion, collaboration, and further research. Show the project objective Hide the project objective 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 medical and health scienceshealth sciencespublic healthnatural sciencescomputer and information sciencesartificial intelligencemachine learningdeep learningsocial sciencespolitical sciencespolitical policiescivil society Programme(s) H2020-EU.2.1.1. - INDUSTRIAL LEADERSHIP - Leadership in enabling and industrial technologies - Information and Communication Technologies (ICT) Main Programme Topic(s) ICT-11-2017 - Collective Awareness Platforms for Sustainability and Social Innovation Call for proposal H2020-ICT-2016-2017 See other projects for this call Sub call H2020-ICT-2017-1 Funding Scheme IA - Innovation action 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 See on map Region Este Cataluña Barcelona Activity type Research Organisations Links Contact the organisation Opens in new window Website Opens in new window Participation in EU R&I programmes Opens in new window HORIZON collaboration network Opens in new window Other funding € 0,00 Participants (10) Sort alphabetically Sort by Net EU contribution Expand all Collapse all 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 DEU Spain Net EU contribution € 131 250,00 Address Paseo sant joan de deu 2 08950 Esplugues de llobregat See on map Region Este Cataluña Barcelona Activity type Research Organisations Links Contact the organisation Opens in new window Website Opens in new window Participation in EU R&I programmes Opens in new window HORIZON collaboration network Opens in new window Other funding € 0,00 UNIVERSITAT POLITECNICA DE CATALUNYA Spain Net EU contribution € 186 250,00 Address Calle jordi girona 31 08034 Barcelona See on map Region Este Cataluña Barcelona Activity type Higher or Secondary Education Establishments Links Contact the organisation Opens in new window Website Opens in new window Participation in EU R&I programmes Opens in new window HORIZON collaboration network Opens in new window Other funding € 0,00 OMADA INTERACTIVA SLL Spain Net EU contribution € 269 087,50 Address Ausias marc 26 planta 4, despatx 40 08010 Barcelona See on map 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) Links Contact the organisation Opens in new window Participation in EU R&I programmes Opens in new window HORIZON collaboration network Opens in new window Other funding € 115 323,23 STICHTING UNITED PARENT PROJECTS MUSCULAR DYSTROPHY Netherlands Net EU contribution € 182 512,50 Address Koninginnelaan 69 3905 GG Veenendaal See on map Region West-Nederland Utrecht Utrecht Activity type Other Links Contact the organisation Opens in new window Participation in EU R&I programmes Opens in new window HORIZON collaboration network Opens in new window Other funding € 0,00 MELANOMA PATIENT NETWORK EUROPE Sweden Net EU contribution € 184 300,00 Address Fjallbo selkna 152 75597 Uppsala See on map Region Östra Sverige Östra Mellansverige Uppsala län Activity type Other Links Contact the organisation Opens in new window Participation in EU R&I programmes Opens in new window HORIZON collaboration network Opens in new window Other funding € 0,00 UNIVERSITY OF NEWCASTLE UPON TYNE United Kingdom Net EU contribution € 175 000,00 Address Kings gate NE1 7RU Newcastle upon tyne See on map Region North East (England) Northumberland and Tyne and Wear Tyneside Activity type Higher or Secondary Education Establishments Links Contact the organisation Opens in new window Website Opens in new window Participation in EU R&I programmes Opens in new window HORIZON collaboration network Opens in new window Other funding € 0,00 THE SYNERGIST Belgium Net EU contribution € 70 014,50 Address Avenue louise 231 1050 Brussels / bruxelles See on map 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 Links Contact the organisation Opens in new window Participation in EU R&I programmes Opens in new window HORIZON collaboration network Opens in new window Other funding € 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 231 1050 Bruxelles See on map 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) Links Contact the organisation Opens in new window Participation in EU R&I programmes Opens in new window HORIZON collaboration network Opens in new window Other funding € 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 See on map Region Este Cataluña Barcelona Activity type Private for-profit entities (excluding Higher or Secondary Education Establishments) Links Contact the organisation Opens in new window Participation in EU R&I programmes Opens in new window HORIZON collaboration network Opens in new window Other funding € 21 543,75 CLICLAB TRANSFORMATIVE AGENT SL Spain Net EU contribution € 45 106,25 Address C/llibertat 11 puerta 1 08012 Barcelona See on map 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) Links Contact the organisation Opens in new window Participation in EU R&I programmes Opens in new window HORIZON collaboration network Opens in new window Other funding € 19 331,25
