Project description
Sustainable ecosystem to improve the lives of rare disease patients
Rare diseases (RD) research remains fragmented throughout Europe, resulting in delays in diagnosis, fewer medicines and reduced access to care. This research domain could greatly benefit from better coordination within and beyond Europe. The EU-cofunded EJP RD project (130 institutions, 35 countries) is developing an effective RD research ecosystem to address this issue. It improves the integration, effectiveness and social impact of RD research by developing, demonstrating and promoting Europe/world-wide research, and sharing clinical data, resources, procedures, knowledge and expertise. It also carries out and further establishes an efficient financial support model for all RD research types coupled with accelerated exploitation of research results for the benefit of patients.
Objective
As recognized by the Council Recommendation 2009/C 151/02, rare diseases (RD) are a prime example of a research area that can strongly profit from coordination on a European and international scale. RD research should be improved to overcome fragmentation, leading to efficacious use of data and resources, faster scientific progress and competitiveness, and most importantly to decrease unnecessary hardship and prolonged suffering of RD patients. In the specific context of the massive generation, need for reuse and efficient interpretation of data, introduction of omics into care practice and the structuration of RD care centers in European Reference Networks, it appears crucial and timely to maximize the potential of already funded tools and programmes by supporting them further, scaling up, linking, and most importantly, adapting them to the needs of end-users through implementation tests in real settings. Such a concerted effort is necessary to develop a sustainable ecosystem allowing a virtuous circle between RD care, research and medical innovation. To achieve this goal, the European Joint Programme on RD (EJP RD) has two major objectives: (i) To improve the integration, the efficacy, the production and the social impact of research on RD through the development, demonstration and promotion of Europe/world-wide sharing of research and clinical data, materials, processes, knowledge and know-how; (ii) To implement and further develop an efficient model of financial support for all types of research on RD (fundamental, clinical, epidemiological, social, economic, health service) coupled with accelerated exploitation of research results for benefit of patients. To this end, the EJP RD actions will be organized within four major Pillars assisted by the central coordination: (P1): Funding of research; (P2): Coordinated access to data and services; (P3) Capacity building; (P4): Accelerated translation of research projects and improvement outcomes of clinical studies.
Fields of science
Keywords
Programme(s)
Funding Scheme
COFUND-EJP - COFUND (European Joint Programme)Coordinator
75654 Paris
France
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Participants (156)
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.
1090 Wien
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VLT 1171 Valletta
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1004 Riga
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51005 Tartu
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The organization defined itself as SME (small and medium-sized enterprise) at the time the Grant Agreement was signed.
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.
HR-10000 Zagreb
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D08 W2A8 DUBLIN
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0450 Oslo
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30625 Hannover
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0179 Tbiilisi
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52621 Ramat Gan
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11010 Beograd
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LS2 7UE Leeds
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1205 Geneve 14
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4017 Plovdiv
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The organization defined itself as SME (small and medium-sized enterprise) at the time the Grant Agreement was signed.
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.
53175 Bonn
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116 36 Praha 1
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13284 Marseille
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104 22 Stockholm
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1000 Ljubljana
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700115 Iasi
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375010 Yerevan
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The organization defined itself as SME (small and medium-sized enterprise) at the time the Grant Agreement was signed.
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.
00165 Roma
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1050 Elsene
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Participation ended
02980 Espoo
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1010 Wien
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1210 Wien
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1090 Wien
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1000 Bruxelles / Brussel
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1000 Bruxelles / Brussel
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3000 Leuven
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118 12 Prague
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10122 Tallinn
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00531 Helsinki
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75013 Paris
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75014 Paris
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75013 Paris
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75015 Paris
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51147 Koln
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52074 Aachen
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10117 Berlin
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79106 Freiburg
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1077 Budapest
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D02 H638 Dublin
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00144 Roma
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00184 Roma
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50122 Firenze
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20124 Milano
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70010 Valenzano Bari
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00185 Roma
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00161 Roma
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70122 Bari
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231261 Pavia
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08950 Esplugues De Llobregat
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00153 Roma
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1050 Riga
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LT-01103 Vilnius
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LT-08661 Vilnius
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4365 Esch-Sur-Alzette
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2593 CE DEN HAAG
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9713 GZ Groningen
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6200 MD Maastricht
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00-801 WARSZAWA
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02 091 Warszawa
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80210 Gdansk
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04730 Warszawa
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1249 074 Lisboa
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1649-016 Lisboa
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814 38 Bratislava
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28029 Madrid
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08003 Barcelona
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28040 Madrid
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28029 Madrid
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101 38 Stockholm
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10158 Stockholm
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LE1 7RH Leicester
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L69 7ZX Liverpool
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NE1 7RU Newcastle Upon Tyne
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Participation ended
1090 Wien
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75012 Paris
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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.
21000 Dijon
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67091 Strasbourg Cedex
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69373 Lyon
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69622 Villeurbanne Cedex
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69120 Heidelberg
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72074 Tuebingen
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72076 Tuebingen
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60323 Frankfurt Am Main
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60596 Frankfurt Am Main
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65199 Wiesbaden
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40136 Bologna
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56123 Pisa
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53100 Siena
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M13 9WL Manchester
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21000 Dijon
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2333 ZA Leiden
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23562 Lübeck
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G12 8QQ Glasgow
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6525 XZ Nijmegen
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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.