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ERA-NET rare disease research implementing IRDiRC objectives

ERA-NET rare disease research implementing IRDiRC objectives

Objective

Rare diseases (RD) are diseases that affect not more than 5 per 10 000 persons (according to the EU definition). 7000 distinct rare diseases exist, affecting between 6% and 8% of the population (about 30 million EU citizens). The lack of specific health policies for rare diseases and the scarcity of the expertise, translate into delayed diagnosis, few medicinal products and difficult access to care. That is why rare diseases are a prime example of a research area that strongly profits from coordination on a European scale. At present only few European countries fund research on rare diseases through specific dedicated programmes. Therefore, the funding of transnational collaborative research is the most effective joint activity to enhance the cooperation between scientists working on rare diseases in Europe and beyond. The E-Rare consortium was built to link responsible funding bodies that combine the scarce resources and fund rare disease research via Joint Transnational Calls (JTCs). The current E-Rare-3 project proposal will extend and strengthen the transnational cooperation by building on the experience and results of the previous E-Rare-1&2 programmes. The consortium comprises 26 institutions from 17 European, Associated and non-European countries. Its international dimension will be directly translated into close collaboration with IRDiRC and other relevant European and international initiatives. IRDiRC guidelines and policies will be implemented in the four JTCs and representatives of the IRDiRC Scientific Committees will be invited to join the Advisory Board of E-Rare-3. Members of the EUCERD group will be involved in identifying rare disease research needs. Patients’ organizations from Europe (represented by EURORDIS) and beyond will be invited as a key partner towards collaborative efforts for research promotion and funding. The collaboration with European Research Infrastructures will be consolidated to enhance efficient and participative research.
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Coordinator

AGENCE NATIONALE DE LA RECHERCHE

Address

50 Avenue Daumesnil
75012 Paris

France

Activity type

Higher or Secondary Education Establishments

EU Contribution

€ 710 253

Participants (26)

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DLR

Germany

EU Contribution

€ 59 018

BUNDESMINISTERIUM FUER BILDUNG UND FORSCHUNG

Germany

EU Contribution

€ 1 035 870

INSTITUTO DE SALUD CARLOS III

Spain

EU Contribution

€ 221 827

FEDERAAL FONDS VOOR WETENSCHAPPELIJK ONDERZOEK

Belgium

EU Contribution

€ 137 166

FONDS VOOR WETENSCHAPPELIJK ONDERZOEK-VLAANDEREN

Belgium

EU Contribution

€ 124 142

MINISTRY OF HEALTH

Israel

EU Contribution

€ 137 166

ISTITUTO SUPERIORE DI SANITA

Italy

EU Contribution

€ 59 018

MINISTERO DELLA SALUTE

Italy

EU Contribution

€ 384 635

REGIONE EMILIA ROMAGNA

Italy

EU Contribution

€ 303 231

ZORGONDERZOEK NEDERLAND ZON

Netherlands

EU Contribution

€ 645 129

TURKIYE BILIMSEL VE TEKNOLOJIK ARASTIRMA KURUMU

Turkey

EU Contribution

€ 384 635

FUNDACAO PARA A CIENCIA E A TECNOLOGIA

Portugal

EU Contribution

€ 164 844

FONDS ZUR FÖRDERUNG DER WISSENSCHAFTLICHEN FORSCHUNG

Austria

EU Contribution

€ 303 231

GENIKI GRAMMATIA EREVNAS KAI TECHNOLOGIAS

Greece

EU Contribution

€ 150 597

NEMZETI KUTATASI FEJLESZTESI ES INNOVACIOS HIVATAL

Hungary

EU Contribution

€ 107 861

ORSZAGOS TUDOMANYOS KUTATASI ALAPPROGRAMOK IRODA

Hungary

Unitatea Executiva pentru Finantarea Invatamantului Superior, a Cercetarii, Dezvoltarii si Inovarii

Romania

EU Contribution

€ 221 827

NARODOWE CENTRUM BADAN I ROZWOJU

Poland

EU Contribution

€ 221 827

LATVIJAS ZINATNU AKADEMIJA

Latvia

DEUTSCHE FORSCHUNGSGEMEINSCHAFT

Germany

EU Contribution

€ 384 635

CANADIAN INSTITUTES OF HEALTH RESEARCH

Canada

FONDS DE RECHERCHE DU QUEBEC - SANTE

Canada

GENOME CANADA

Canada

SCHWEIZERISCHER NATIONALFONDS ZUR FORDERUNG DER WISSENSCHAFTLICHEN FORSCHUNG

Switzerland

OESTERREICHISCHE FORSCHUNGSFOERDERUNGSGESELLSCHAFT MBH

Austria

VALSTS IZGLITIBAS ATTISTIBAS AGENTURA

Latvia

EU Contribution

€ 127 398

Project information

Grant agreement ID: 643578

Status

Ongoing project

  • Start date

    1 December 2014

  • End date

    30 November 2019

Funded under:

H2020-EU.3.1.

  • Overall budget:

    € 23 290 000

  • EU contribution

    € 5 884 310

Coordinated by:

AGENCE NATIONALE DE LA RECHERCHE

France