CORDIS
EU research results

CORDIS

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European Joint Programme on Rare Diseases

Project information

Grant agreement ID: 825575

Status

Ongoing project

  • Start date

    1 January 2019

  • End date

    31 December 2023

Funded under:

H2020-EU.3.1.3.

  • Overall budget:

    € 100 176 062,29

  • EU contribution

    € 55 073 831,17

Coordinated by:

INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE

France

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.
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Coordinator

INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE

Address

Rue De Tolbiac 101
75654 Paris

France

Activity type

Research Organisations

EU Contribution

€ 12 042 284,76

Participants (88)

FONDS ZUR FÖRDERUNG DER WISSENSCHAFTLICHEN FORSCHUNG

Austria

EU Contribution

€ 524 000

AIT AUSTRIAN INSTITUTE OF TECHNOLOGY GMBH

Austria

EU Contribution

€ 887 811

LUDWIG BOLTZMANN GESELLSCHAFT GMBH

Austria

EU Contribution

€ 144 410

FONDS DE LA RECHERCHE SCIENTIFIQUE- FNRS

Belgium

EU Contribution

€ 248 260

FONDS VOOR WETENSCHAPPELIJK ONDERZOEK-VLAANDEREN

Belgium

EU Contribution

€ 575 425

KATHOLIEKE UNIVERSITEIT LEUVEN

Belgium

EU Contribution

€ 85 037

MINISTRY OF EDUCATION YOUTH AND SPORTS

Czechia

EU Contribution

€ 470 400

SOTSIAALMINISTEERIUM

Estonia

EU Contribution

€ 55 575

SUOMEN AKATEMIA

Finland

EU Contribution

€ 512 750

AGENCE NATIONALE DE LA RECHERCHE

France

EU Contribution

€ 2 479 350

FONDATION MALADIES RARES

France

EU Contribution

€ 908 920

ASS FRANCAISE CONTRE LES MYOPATHIES

France

EU Contribution

€ 5 162

IMAGINE INSTITUT DES MALADIES GENETIQUES NECKER ENFANTS MALADES FONDATION

France

EU Contribution

€ 23 537

DEUTSCHES ZENTRUM FUER LUFT - UND RAUMFAHRT EV

Germany

EU Contribution

€ 2 686 817

UNIVERSITAETSKLINIKUM AACHEN

Germany

EU Contribution

€ 445 550

CHARITE - UNIVERSITAETSMEDIZIN BERLIN

Germany

EU Contribution

€ 319 056

UNIVERSITAETSKLINIKUM FREIBURG

Germany

EU Contribution

€ 126 584

NEMZETI KUTATASI FEJLESZTESI ES INNOVACIOS HIVATAL

Hungary

EU Contribution

€ 190 025

THE HEALTH RESEARCH BOARD

Ireland

EU Contribution

€ 332 130

MINISTERO DELLA SALUTE

Italy

EU Contribution

€ 1 635 350

REGIONE TOSCANA

Italy

EU Contribution

€ 152 400

FONDAZIONE REGIONALE PER LA RICERCA BIOMEDICA

Italy

EU Contribution

€ 547 900

FONDAZIONE PER LA RICERCA FARMACOLOGICA GIANNI BENZI ONLUS

Italy

EU Contribution

€ 178 255

FONDAZIONE TELETHON

Italy

EU Contribution

€ 929 539,63

ISTITUTO SUPERIORE DI SANITA

Italy

EU Contribution

€ 723 382

CONSORZIO PER VALUTAZIONI BIOLOGICHE E FARMACOLOGICHE

Italy

EU Contribution

€ 414 662

TEDDY - EUROPEAN NETWORK OF EXCELLENCE FOR PAEDIATRIC CLINICAL RESEARCH

Italy

EU Contribution

€ 173 113,50

MINISTERO DELL'ISTRUZIONE, DELL'UNIVERSITA' E DELLA RICERCA

Italy

EU Contribution

€ 185 086

VALSTS IZGLITIBAS ATTISTIBAS AGENTURA

Latvia

EU Contribution

€ 10 185

Lietuvos mokslo taryba

Lithuania

EU Contribution

€ 99 388

VIESOJI ISTAIGA VILNIAUS UNIVERSITETO LIGONINE SANTAROS KLINIKOS

Lithuania

EU Contribution

€ 133 364

FONDS NATIONAL DE LA RECHERCHE

Luxembourg

EU Contribution

€ 283 492

ZORGONDERZOEK NEDERLAND ZON

Netherlands

EU Contribution

€ 2 899 566

ACADEMISCH ZIEKENHUIS GRONINGEN

Netherlands

EU Contribution

€ 1 372 748

UNIVERSITEIT MAASTRICHT

Netherlands

EU Contribution

€ 620 221

NARODOWE CENTRUM BADAN I ROZWOJU

Poland

EU Contribution

€ 499 625

WARSZAWSKI UNIWERSYTET MEDYCZNY

Poland

EU Contribution

€ 81 255

GDANSKI UNIWERSYTET MEDYCZNY

Poland

EU Contribution

€ 87 590

INSTYTUT POMNIK CENTRUM ZDROWIA DZIECKA

Poland

EU Contribution

€ 87 155

FUNDACAO PARA A CIENCIA E A TECNOLOGIA

Portugal

EU Contribution

€ 143 325

INSTITUTO NACIONAL DE SAUDE DR. RICARDO JORGE

Portugal

EU Contribution

€ 14 026

SLOVENSKA AKADEMIA VIED

Slovakia

EU Contribution

€ 127 005

INSTITUTO DE SALUD CARLOS III

Spain

EU Contribution

€ 765 898

FUNDACIO CENTRE DE REGULACIO GENOMICA

Spain

EU Contribution

€ 1 046 730

UNIVERSIDAD POLITECNICA DE MADRID

Spain

EU Contribution

€ 341 571

CONSORCIO CENTRO DE INVESTIGACION BIOMEDICA EN RED M.P.

Spain

EU Contribution

€ 61 853

VETENSKAPSRADET - SWEDISH RESEARCH COUNCIL

Sweden

EU Contribution

€ 645 050

VERKET FOR INNOVATIONSSYSTEM

Sweden

EU Contribution

€ 439 300

UNIVERSITY OF LEICESTER

United Kingdom

EU Contribution

€ 1 367 695

THE UNIVERSITY OF LIVERPOOL

United Kingdom

EU Contribution

€ 69 711

UNIVERSITY OF NEWCASTLE UPON TYNE

United Kingdom

EU Contribution

€ 66 412

ST. ANNA KINDERKREBSFORSCHUNG

Austria

EU Contribution

€ 113 610

ASSISTANCE PUBLIQUE HOPITAUX DE PARIS

France

EU Contribution

€ 648 480

HOPITAUX UNIVERSITAIRES DE STRASBOURG

France

EU Contribution

€ 11 900

CENTRE DE LUTTE CONTRE LE CANCER LEON BERARD

France

EU Contribution

€ 28 061,25

UNIVERSITATSKLINIKUM HEIDELBERG

Germany

EU Contribution

€ 643 196

EBERHARD KARLS UNIVERSITAET TUEBINGEN

Germany

EU Contribution

€ 611 511

JOHANN WOLFGANG GOETHE-UNIVERSITATFRANKFURT AM MAIN

Germany

EU Contribution

€ 1 015 552,13

HELIOS DR. HORST SCHMIDT KLINIKEN WIESBADEN GMBH

Germany

ISTITUTO ORTOPEDICO RIZZOLI

Italy

EU Contribution

€ 77 661

AZIENDA OSPEDALIERO UNIVERSITARIA PISANA

Italy

EU Contribution

€ 12 311

AZIENDA OSPEDALIERA UNIVERSITARIA SENESE

Italy

EU Contribution

€ 21 223,13

ACADEMISCH ZIEKENHUIS LEIDEN

Netherlands

EU Contribution

€ 2 048 753,88

STICHTING KATHOLIEKE UNIVERSITEIT

Netherlands

EU Contribution

€ 1 082 879,72

ACADEMISCH MEDISCH CENTRUM BIJ DE UNIVERSITEIT VAN AMSTERDAM

Netherlands

EU Contribution

€ 583 336

ERASMUS UNIVERSITAIR MEDISCH CENTRUM ROTTERDAM

Netherlands

EU Contribution

€ 24 622

SERVICIO MADRILENO DE SALUD

Spain

EU Contribution

€ 48 405

THE NEWCASTLE UPON TYNE HOSPITALS NHS FOUNDATION TRUST

United Kingdom

EU Contribution

€ 42 011

EUROPEAN ORGANISATION FOR RESEARCH AND TREATMENT OF CANCER AISBL

Belgium

EU Contribution

€ 5 162

INFRAFRONTIER GMBH

Germany

EU Contribution

€ 182 756

BIOBANKS AND BIOMOLECULAR RESOURCES RESEARCH INFRASTRUCTURE CONSORTIUM (BBMRI-ERIC)

Austria

EU Contribution

€ 1 620 071,26

ECRIN EUROPEAN CLINICAL RESEARCH INFRASTRUCTURE NETWORK

France

EU Contribution

€ 418 573

EATRIS ERIC

Netherlands

EU Contribution

€ 751 476,25

EUROPEAN MOLECULAR BIOLOGY LABORATORY

Germany

EU Contribution

€ 1 899 849,91

EURORDIS - EUROPEAN ORGANISATION FOR RARE DISEASES ASSOCIATION

France

EU Contribution

€ 930 665

MINISTRY OF HEALTH

Israel

EU Contribution

€ 476 942

SCHWEIZERISCHER NATIONALFONDS ZUR FORDERUNG DER WISSENSCHAFTLICHEN FORSCHUNG

Switzerland

EU Contribution

€ 714 035

BLACKSWAN FOUNDATION

Switzerland

EU Contribution

€ 193 287

TURKIYE BILIMSEL VE TEKNOLOJIK ARASTIRMA KURUMU

Turkey

EU Contribution

€ 824 162

ACIBADEM UNIVERSITESI

Turkey

EU Contribution

€ 223 365

HACETTEPE UNIVERSITESI

Turkey

EU Contribution

€ 51 271

CANADIAN INSTITUTES OF HEALTH RESEARCH

Canada

FONDS DE RECHERCHE DU QUEBEC - SANTE

Canada

INSERM TRANSFERT SA

France

EU Contribution

€ 315 000

GENIKI GRAMMATIA EREVNAS KAI TECHNOLOGIAS

Greece

EU Contribution

€ 20 658,75

DEUTSCHE FORSCHUNGSGEMEINSCHAFT

Germany

AZIENDA SANITARIA UNIVERSITARIA INTEGRATA DI UDINE

Italy

AZIENDA SANITARIA UNIVERSITARIA FRIULI CENTRALE

Italy

EU Contribution

€ 167 107

Project information

Grant agreement ID: 825575

Status

Ongoing project

  • Start date

    1 January 2019

  • End date

    31 December 2023

Funded under:

H2020-EU.3.1.3.

  • Overall budget:

    € 100 176 062,29

  • EU contribution

    € 55 073 831,17

Coordinated by:

INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE

France