EJP RD – European Joint Programme on Rare Diseases

EJP RD – European Joint Programme on Rare Diseases 2019-09-18T09:58:22+00:00

Website

www.ejprarediseases.org

Role of CVBF

Partner

Description

The main objective of the European Joint Programme on Rare Diseases (EJP RD) is to create a research and innovation pipeline “from bench to bedside” ensuring rapid translation of research results into clinical applications and uptake in healthcare for the benefit of patients.

In addition, the programme is aimed to improve integration, efficacy, production and social impact of research on rare diseases through the development and promotion of sharing of research and clinical data, materials, processes, knowledge and know-how, and through an efficient model of financial support for research on rare diseases. The number of participating countries is 35 including 27 EU Member States (Austria, Belgium, Bulgaria, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Croatia, Ireland, Italy, Netherlands, Latvia, Lithuania, Luxembourg, Malta, Poland, Portugal, Romania, Spain, Sweden, Slovakia, Slovenia, United Kingdom), 7 Associated Countries (Armenia, Georgia, Switzerland, Israel, Turkey, Norway, Serbia) and 1 non-EU Country (Canada). So far, the project brings over 130 institutions including research-funding organization, ERNs (European Reference Networks), European research infrastructures.

The programme is divided into four main Pillars: Funding of research, Coordinated Access to data and resources, Capacity Building, Accelerated translation of research projects and improvement outcomes of clinical studies. Moreover, the following transversal activities are foreseen by the programme within Pillar 0: Integrative Research Strategy, Communication, Sustainability, Ethical, legal, regulatory and IPR issues.

The project will see the participation of CVBF that will bring the paediatric competences and expertise within work package 19 aimed to support the Rare Diseases (RD) community to more effectively translate high quality research into high impact interventions for the RD patient community, by creating a bridge between basic research and medical innovation, otherwise known as the “bench to bed-side” approach. To this aim, self-help resources and active project mentoring and technical support will be provided to selected projects and CVBF will contribute to provide paediatric self-help resources and will pay particular attention on paediatric projects to be assessed and supported within these activities.

Moreover, CVBF will support the project activities aimed to improve efficiency and outcomes of translational research, and develop novel funding concept to reduce the ‘valley of death’ funding gap.

Moreover, CVBF will be involved in the evaluation of the quality of the EJP RD activities and the achievement of the expected project goals within the Coordination and Management Work Package.

Funds

European Union’s Horizon 2020 research and innovation programme under grant agreement N°825575

Duration

5 years

Partners

AUSTRIAN SCIENCE FUND (FWF)

AUSTRIAN INSTITUTE OF TECHNOLOGY GMBH (AIT)

LUDWIG BOLTZMANN GESELLSCHAFT GMBH (LBG GmBH)

ST. ANNA KINDERKREBSFORSCHUNG (CCRI)

FOND DE LA RECHERCHE SCIENTIFIQUE (FNRS)

FONDS VOOR WETENSCHAPPELIJK ONDERZOEK – VLAANDEREN (FWO)

UNIVERSITY OF LEUVEN (KU LEUVEN)

CANADIAN INSTITUTES OF HEALTH RESEARCH (CIHR)

FONDS DE RECHERCHE DU QUEBEC – SANTE (FRQS)

MINISTRY OF EDUCATION YOUTH AND SPORT (MEYS)

MINISTRY OF SOCIAL AFFAIRS OF ESTONIA (MOSAE)

BBMRI ERIC – EUROPEAN RESEARCH INFRASTRUCTURE FOR BIOBANKING (BBMRI)

EATRIS ERIC – EUROPEAN INFRASTRUCTURE FOR TRANSLATIONAL MEDICINE (EATRIS)

ECRIN ERIC – EUROPEAN CLINICAL RESEARCH INFRASTRUCTURE NETWORK (ECRIN)

EUROPEAN MOLECULAR BIOLOGY LABORATORY (ELIXIR EMBL-EBI)

EUROPEAN ORGANISATION FOR RESEARCH AND TREATMENT OF CANCER (EORTC)

INFRAFRONTIER – MOUSE DISEASE MODELS (INFRAFRONTIER)

EURORDIS – RARE DISEASES EUROPE (EURORDIS)

SUOMEN AKATEMIA (AKA)

ASSISTANCE PUBLIQUE HOPITAUX DE PARIS (APHP)

ASSOCIATION FRANÇAISE CONTRE LES MYOPATHIES (AFM)

CENTRE LEON BERARD (CLB)

FRENCH FOUNDATION FOR RARE DISEASES (FFRD)

FRENCH NATIONAL RESEARCH AGENCY (ANR)

HOPITAUX UNIVERSITAIRES DE STRASBOURG (HUS)

INSTITUTE FOR GENETIC DISEASES (IMAGINE)

INSERM TRANSFERT (IT)

NATIONAL INSTITUTE FOR HEALTH AND MEDICAL RESEARCH (INSERM) – EJP RD COORDINATOR

CHARITE – UNIVERSITÄTSMEDIZIN BERLIN (CHARITE)

DEUTSCHES ZENTRUM FUER LUFT – UND RAUMFAHRT EV (DLR)

DEUTSCHE FORSCHUNGSGEMEINSCHAFT (DFG)

EBERHARD KARLS UNIVERSITÄT TÜBINGEN (EKUT)

GOETHE UNIVERSITÄT FRANKFURT (GUF)

UNIVERSITAETSKLINIKUM AACHEN (UKA)

UNIVERSITAETSKLINIKUM FREIBURG (UKLFR)

UNIVERSITAETSKLINIKUM HEIDELBERG (UKL-HD)

GENERAL SECRETARIAT OF RESEARCH AND TECHNOLOGY (GSRT)

NEMZETI, KUTATASI, FEJLESZTESI ES INNOVACIOS HIVATAL (NKFIH)

HEALTH RESEARCH BOARD (HRB)

CHIEF SCIENTIST OFFICE – MINISTRY OF HEALTH (CSO-MOH)

AZIENDA OSPEDALIERO UNIVERSITARIA PISANA (AOUP)

AZIENDA OSPEDALIERA UNIVERSITARIA SENESE (AOUS)

CONSORZIO PER VALUTAZIONI BIOLOGICHE E FARMACOLOGICHE (CVBF)

FONDAZIONE REGIONALE PER LA RICERCA BIOMEDICA (FRRB)

FONDAZIONE PER LA RICERCA FARMACOLOGICA GIANNI BENZI ONLUS (FGB)

FONDAZIONE TELETHON (FTELE)

ISTITUTO SUPERIORE DI SANITA (ISS)

ISTITUTO ORTOPEDICO RIZZOLI – IRCCS (IOR)

MINISTERO DELL’ISTRUZIONE, DELL’UNIVERSITÀ E DELLA RICERCA (MIUR)

MINISTRY OF HEALTH (IT MOH)

TEDDY- EUROPEAN NETWORK OF EXCELLENCE FOR PAEDIATRIC CLINICAL RESEARCH (TEDDY)

TUSCANY REGION – REGIONE TOSCANA (RT)

VALSTS IZGLITIBAS ATTISTIBAS AGENTURA (VIAA)

LIETUVOS MOKSLO TARYBA (RCL)

VILNIUS UNIVERSITY HOSPITAL SANTAROS KLINIKOS (VUH SK)

FONDS NATIONAL DE LA RECHERCHE (FNR)

ACADEMISCH ZIEKENHUIS GRONINGEN (UMCG)

ACADEMISCH MEDISCH CENTRUM BIJ DE UNIVERSITEIT VAN AMSTERDAM (AMC)

ERASMUS UNIVERSITAIR MEDISCH CENTRUM ROTTERDAM (ERASMUS-MC)

LEIDEN UNIVERSITY MEDICAL CENTER (LUMC)

STICHTING KATHOLIEKE UNIVERSITEIT (RUMC)

UNIVERSITEIT MAASTRICHT (UM)

ZORGONDERZOEK NEDERLAND (ZonMw)

MEDICAL UNIVERSITY OF WARSAW (MUW)

MEDICAL UNIVERSITY GDANSK (MUG)

NATIONAL CENTRE FOR RESEARCH AND DEVELOPMENT (NCBR)

INSTYTUT POMNIK- CENTRUM ZDROWIA DZIECKA (IPCZD)

FUNDAÇÃO PARA A CIENCIA E A TECNOLOGIA (FCT)

INSTITUTO NACIONAL DE SAUDE DOUTOR RICARDO JORGE (INSA)

SLOVAK ACADEMY OF SCIENCES (SAS)

CONSORCIO CENTRO DE INVESTIGACION BIOMEDICA EN RED, M.P. (CIBER)

FUNDACIO CENTRE DE REGULACIO GENOMICA (CNAG-CRG)

INSTITUTE OF HEALTH CARLOS III (ISCIII)

SERVICIO MADRILEÑO DE SALUD (SERMAS)

UNIVERSIDAD POLITECNICA DE MADRID (UPM)

SWEDISH RESEARCH COUNCIL (SRC)

VINNOVA (VINNOVA)

Switzerland

BLACKSWAN FOUNDATION (BSF)

SWISS NATIONAL SCIENCE FOUNDATION (SNSF)

ACIBADEM UNIVERSITY (ACURARE)

HACETTEPE UNIVERSITY (HUGEN)

TÜBİTAK TURKIYE BILIMSEL VE TEKNOLOJIK ARASTIRMA KURUMU (TUBITAK)

UNIVERSITY OF LEICESTER (ULEIC)

UNIVERSITY OF LIVERPOOL (ULIV)

UNIVERSITY OF NEWCASTLE UPON TYNE (UNEW)