European Joint Programme on Rare Diseases

akronüüm: EJP RD
algus:
lõpp:
 
programm: H2020 - Horisont 2020
alaprogramm: HEALTH - Tervishoid, demograafilised muutused ja heaolu
instrument: COFUND-EJP - COFUND (EL teaduse ühise kavandamise algatusted )
projektikonkurss: H2020-SC1-2018-Single-Stage-RTD
projekti number: 825575
kestus kuudes: 60
partnerite arv: 85
 
lühikokkuvõte: 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.
partneri jrk nr ja roll partneri nimi riik kontaktisik koduleht
1 koordinaator INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE FR Daria JULKOWSKA www.inserm.fr
2 partner FONDS ZUR FÖRDERUNG DER WISSENSCHAFTLICHEN FORSCHUNG AT www.fwf.ac.at
3 partner AIT AUSTRIAN INSTITUTE OF TECHNOLOGY GMBH AT http://www.ait.ac.at/
4 partner LUDWIG BOLTZMANN GESELLSCHAFT GMBH AT www.lbg.ac.at
5 partner FONDS NATIONAL DE LA RECHERCHE SCIENTIFIQUE BE
6 partner FONDS VOOR WETENSCHAPPELIJK ONDERZOEK-VLAANDEREN BE www.fwo.be
7 partner KATHOLIEKE UNIVERSITEIT LEUVEN BE www.kuleuven.be
8 partner MINISTRY OF EDUCATION YOUTH AND SPORTS CZ www.msmt.cz
9 partner SOTSIAALMINISTEERIUM EE http://www.sm.ee/
10 partner SUOMEN AKATEMIA FI www.aka.fi
11 partner AGENCE NATIONALE DE LA RECHERCHE FR www.agence-nationale-recherche.fr
12 partner FONDATION MALADIES RARES FR
13 partner Association Française contre les Myopathies FR http://www.afm-telethon.fr
14 partner IMAGINE INSTITUT DES MALADIES GENETIQUES NECKER ENFANTS MALADES FONDATION FR www.fondationimagine.org
15 partner DEUTSCHES ZENTRUM FUER LUFT - UND RAUMFAHRT EV DE www.dlr.de
16 partner UNIVERSITAETSKLINIKUM AACHEN DE www.ukaachen.de
17 partner CHARITE - UNIVERSITAETSMEDIZIN BERLIN DE www.charite.de
18 partner UNIVERSITAETSKLINIKUM FREIBURG DE http://www.uniklinik-freiburg.de/ip/splash/start.html
19 partner NEMZETI KUTATASI FEJLESZTESI ES INNOVACIOS HIVATAL HU www.nkfih.gov.hu
20 partner THE HEALTH RESEARCH BOARD IE www.hrb.ie
21 partner MINISTERO DELLA SALUTE IT www.salute.gov.it
22 partner REGIONE TOSCANA IT www.regione.toscana.it
23 partner FONDAZIONE REGIONALE PER LA RICERCA BIOMEDICA IT www.frrb.it
24 partner FONDAZIONE PER LA RICERCA FARMACOLOGICA GIANNI BENZI ONLUS IT www.benzifoundation.org
25 partner FONDAZIONE TELETHON IT www.telethon.it
26 partner ISTITUTO SUPERIORE DI SANITA IT http://www.iss.it
27 partner CONSORZIO PER VALUTAZIONI BIOLOGICHE E FARMACOLOGICHE IT www.cvbf.net
28 partner TEDDY - EUROPEAN NETWORK OF EXCELLENCE FOR PAEDIATRIC CLINICAL RESEARCH IT www.teddynetwork.net
29 partner MINISTERO DELL'ISTRUZIONE, DELL'UNIVERSITA' E DELLA RICERCA IT www.istruzione.it
30 partner VALSTS IZGLITIBAS ATTISTIBAS AGENTURA LV www.viaa.gov.lv
31 partner Lietuvos mokslo taryba LT http://www.lmt.lt/
32 partner VIESOJI ISTAIGA VILNIAUS UNIVERSITETO LIGONINE SANTAROS KLINIKOS LT www.santa.lt
33 partner FONDS NATIONAL DE LA RECHERCHE LU www.fnr.lu
34 partner ZORGONDERZOEK NEDERLAND ZON NL WWW.ZONMW.NL
35 partner ACADEMISCH ZIEKENHUIS GRONINGEN NL www.umcg.nl
36 partner UNIVERSITEIT MAASTRICHT NL http://www.maastrichtuniversity.nl
37 partner NARODOWE CENTRUM BADAN I ROZWOJU PL www.ncbr.gov.pl
38 partner WARSZAWSKI UNIWERSYTET MEDYCZNY PL www.wum.edu.pl
39 partner GDANSKI UNIWERSYTET MEDYCZNY PL www.gumed.edu.pl
40 partner INSTYTUT POMNIK CENTRUM ZDROWIA DZIECKA PL www.czd.pl
41 partner FUNDACAO PARA A CIENCIA E A TECNOLOGIA PT www.fct.pt
42 partner INSTITUTO NACIONAL DE SAUDE DR. RICARDO JORGE PT http://www.insa.pt
43 partner SLOVENSKA AKADEMIA VIED SK www.sav.sk
44 partner INSTITUTO DE SALUD CARLOS III ES http://www.isciii.es
45 partner FUNDACIO CENTRE DE REGULACIO GENOMICA ES www.crg.es
46 partner UNIVERSIDAD POLITECNICA DE MADRID ES www.upm.es
47 partner CONSORCIO CENTRO DE INVESTIGACION BIOMEDICA EN RED M.P. ES www.ciberisciii.es
48 partner VETENSKAPSRADET - SWEDISH RESEARCH COUNCIL SE www.vr.se
49 partner VERKET FÖR INNOVATIONSSYSTEM SE www.vinnova.se
50 partner UNIVERSITY OF LEICESTER UK www.le.ac.uk
51 partner THE UNIVERSITY OF LIVERPOOL UK www.liverpool.ac.uk
52 partner UNIVERSITY OF NEWCASTLE UPON TYNE UK www.newcastle.ac.uk
53 partner ST. ANNA KINDERKREBSFORSCHUNG AT www.ccri.at/science
54 partner ASSISTANCE PUBLIQUE - HOPITAUX DE PARIS FR www.aphp.fr
55 partner HOPITAUX UNIVERSITAIRES DE STRASBOURG FR www.chru-strasbourg.fr
56 partner CENTRE ANTICANCEREUX LEON BERARD FR www.centreleonberard.fr
57 partner UNIVERSITAETSKLINIKUM HEIDELBERG DE
58 partner EBERHARD KARLS UNIVERSITAET TUEBINGEN DE www.uni-tuebingen.de
59 partner JOHANN WOLFGANG GOETHE-UNIVERSITATFRANKFURT AM MAIN DE www.uni-frankfurt.de
60 partner HELIOS DR. HORST SCHMIDT KLINIKEN WIESBADEN GMBH DE
61 partner ISTITUTO ORTOPEDICO RIZZOLI IT www.ior.it
62 partner AZIENDA OSPEDALIERO UNIVERSITARIA PISANA IT http://www.ao-pisa.toscana.it/
63 partner AZIENDA OSPEDALIERA UNIVERSITARIA SENESE IT www.ao-siena.toscana.it
64 partner ACADEMISCH ZIEKENHUIS LEIDEN NL www.lumc.nl
65 partner STICHTING KATHOLIEKE UNIVERSITEIT NL www.ru.nl
66 partner Academisch Medisch Centrum bij de Universiteit van Amsterdam NL www.amc.nl
67 partner ERASMUS UNIVERSITAIR MEDISCH CENTRUM ROTTERDAM NL www.erasmusmc.nl
68 partner SERVICIO MADRILENO DE SALUD ES http://cort.as/10Yf
69 partner THE NEWCASTLE UPON TYNE HOSPITALS NHS FOUNDATION TRUST UK
70 partner GREAT ORMOND STREET HOSPITAL FOR CHILDREN NATIONAL HEALTH SERVICE TRUST UK
71 partner EUROPEAN ORGANISATION FOR RESEARCH AND TREATMENT OF CANCER AISBL BE www.eortc.be
72 partner INFRAFRONTIER GMBH DE www.infrafrontier.eu
73 partner BIOBANKS AND BIOMOLECULAR RESOURCESRESEARCH INFRASTRUCTURE CONSORTIUM(BBMRI-ERIC) AT www.bbmri-eric.eu
74 partner ECRIN EUROPEAN CLINICAL RESEARCH INFRASTRUCTURE NETWORK FR www.ecrin.org
75 partner EATRIS ERIC NL www.eatris.eu
76 partner EUROPEAN MOLECULAR BIOLOGY LABORATORY DE www.embl.org
77 partner EURORDIS - EUROPEAN ORGANISATION FOR RARE DISEASES ASSOCIATION FR www.eurordis.org
78 partner MINISTRY OF HEALTH IL www.health.gov.il
79 partner SCHWEIZERISCHER NATIONALFONDS ZUR FORDERUNG DER WISSENSCHAFTLICHEN FORSCHUNG CH www.snf.ch
80 partner BLACKSWAN FOUNDATION CH https://www.blackswanfoundation.ch/en/
81 partner TURKIYE BILIMSEL VE TEKNOLOJIK ARASTIRMA KURUMU TR www.tubitak.gov.tr
82 partner ACIBADEM UNIVERSITESI TR www.acibadem.edu.tr
83 partner HACETTEPE UNIVERSITESI TR www.hacettepe.edu.tr
84 partner CANADIAN INSTITUTES OF HEALTH RESEARCH CA www.cihr-irsc.gc.ca
85 partner FONDS DE RECHERCHE DU QUEBEC - SANTE CA www.frqs.gouv.qc.ca