EJP RD - European Joint Programme on Rare Diseases / Edukad projektid

programm [ H2020 ]

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