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EJP RD SIGNED

European Joint Programme on Rare Diseases

Total Cost €

EC-Contrib. €

Partnership

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EJP RD project word cloud

Explore the words cloud of the EJP RD project. It provides you a very rough idea of what is the project "EJP RD" about.

actions improvement ecosystem suffering efficacy pillars p1 scientific benefit recommendation 2009 prime unnecessary centers capacity appears networks accelerated building area central world settings materials joint demonstration efficacious tests circle data fundamental patients overcome coupled scaling clinical faster decrease social hardship tools service epidemiological international competitiveness omics sustainable innovation outcomes profit integration care assisted financial fragmentation sharing maximize reuse concerted diseases translation generation medical promotion economic virtuous progress health rare p4 coordinated prolonged council 151 context rd p2 supporting p3 reference effort introduction linking structuration efficient services model 02 as ejp interpretation adapting types massive

Project "EJP RD" data sheet

The following table provides information about the project.

Coordinator	INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE Organization address address: RUE DE TOLBIAC 101 city: PARIS postcode: 75654 website: www.inserm.fr contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.
Coordinator Country	France [FR]
Total cost	100˙176˙062 €
EC max contribution	55˙073˙831 € (55%)
Programme	1. H2020-EU.3.1.3. (Treating and managing disease)
Code Call	H2020-SC1-2018-Single-Stage-RTD
Funding Scheme	COFUND-EJP
Starting year	2019
Duration (year-month-day)	from 2019-01-01 to 2023-12-31

Partnership

Take a look of project's partnership.

#	participants	country	role	EC contrib. [€]
1	INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE Organization address address: RUE DE TOLBIAC 101 city: PARIS postcode: 75654 website: www.inserm.fr contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	FR (PARIS)	coordinator	12˙066˙181.00
2	ZORGONDERZOEK NEDERLAND ZON ZORGONDERZOEK NEDERLAND ZON Organization address address: Laan Van Nieuw Oost Indie 334 city: DEN HAAG postcode: 2593CE website: http://www.zonmw.nl/ contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	NL (DEN HAAG)	participant	2˙899˙566.00
3	DEUTSCHES ZENTRUM FUER LUFT - UND RAUMFAHRT EV DEUTSCHES ZENTRUM FUER LUFT - UND RAUMFAHRT EV Organization address address: Linder Hoehe city: KOELN postcode: 51147 website: www.dlr.de contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	DE (KOELN)	participant	2˙686˙817.00
4	AGENCE NATIONALE DE LA RECHERCHE AGENCE NATIONALE DE LA RECHERCHE Organization address address: 50 avenue Daumesnil city: PARIS postcode: 75012 website: www.agence-nationale-recherche.fr contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	FR (PARIS)	participant	2˙479˙350.00
5	ACADEMISCH ZIEKENHUIS LEIDEN ACADEMISCH ZIEKENHUIS LEIDEN Organization address address: ALBINUSDREEF 2 city: LEIDEN postcode: 2333 ZA website: www.lumc.nl contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	NL (LEIDEN)	participant	2˙048˙753.00
6	EUROPEAN MOLECULAR BIOLOGY LABORATORY EUROPEAN MOLECULAR BIOLOGY LABORATORY Organization address address: Meyerhofstrasse 1 city: HEIDELBERG postcode: 69117 website: http://www.embl.de contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	DE (HEIDELBERG)	participant	1˙899˙849.00
7	MINISTERO DELLA SALUTE MINISTERO DELLA SALUTE Organization address address: Via Giorgio Ribotta 5 city: ROMA postcode: 144 website: www.salute.gov.it contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	IT (ROMA)	participant	1˙635˙350.00
8	BIOBANKS AND BIOMOLECULAR RESOURCES RESEARCH INFRASTRUCTURE CONSORTIUM (BBMRI-ERIC) BIOBANKS AND BIOMOLECULAR RESOURCES RESEARCH INFRASTRUCTURE CONSORTIUM (BBMRI-ERIC) Organization address address: NEUE STIFTINGTALSTRASSE 2/B/6 city: GRAZ postcode: 8010 website: www.bbmri-eric.eu contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	AT (GRAZ)	participant	1˙620˙071.00
9	ACADEMISCH ZIEKENHUIS GRONINGEN ACADEMISCH ZIEKENHUIS GRONINGEN Organization address address: HANZEPLEIN 1 city: GRONINGEN postcode: 9713 GZ website: www.umcg.nl contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	NL (GRONINGEN)	participant	1˙372˙748.00
10	UNIVERSITY OF LEICESTER UNIVERSITY OF LEICESTER Organization address address: UNIVERSITY ROAD city: LEICESTER postcode: LE1 7RH website: www.le.ac.uk contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	UK (LEICESTER)	participant	1˙367˙695.00
11	STICHTING KATHOLIEKE UNIVERSITEIT STICHTING KATHOLIEKE UNIVERSITEIT Organization address address: GEERT GROOTEPLEIN NOORD 9 city: NIJMEGEN postcode: 6525 EZ website: www.radboudumc.nl contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	NL (NIJMEGEN)	participant	1˙082˙879.00
12	FUNDACIO CENTRE DE REGULACIO GENOMICA FUNDACIO CENTRE DE REGULACIO GENOMICA Organization address address: CARRER DOCTOR AIGUADER 88 city: BARCELONA postcode: 8003 website: www.crg.es contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	ES (BARCELONA)	participant	1˙046˙730.00
13	JOHANN WOLFGANG GOETHE-UNIVERSITATFRANKFURT AM MAIN JOHANN WOLFGANG GOETHE-UNIVERSITATFRANKFURT AM MAIN Organization address address: THEODOR W ADORNO PLATZ 1 city: FRANKFURT AM MAIN postcode: 60323 website: www.uni-frankfurt.de contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	DE (FRANKFURT AM MAIN)	participant	1˙015˙552.00
14	EURORDIS - EUROPEAN ORGANISATION FOR RARE DISEASES ASSOCIATION EURORDIS - EUROPEAN ORGANISATION FOR RARE DISEASES ASSOCIATION Organization address address: RUE DIDOT 96 city: Paris postcode: 75014 website: www.eurordis.org contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	FR (Paris)	participant	930˙665.00
15	FONDAZIONE TELETHON FONDAZIONE TELETHON Organization address address: VIA VARESE 16/B city: ROMA postcode: 185 website: www.telethon.it contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	IT (ROMA)	participant	929˙539.00
16	FONDATION MALADIES RARES FONDATION MALADIES RARES Organization address address: RUE DIDOT 96 city: PARIS postcode: 75014 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	FR (PARIS)	participant	908˙920.00
17	AIT AUSTRIAN INSTITUTE OF TECHNOLOGY GMBH AIT AUSTRIAN INSTITUTE OF TECHNOLOGY GMBH Organization address address: GIEFINGGASSE 4 city: WIEN postcode: 1210 website: http://www.ait.ac.at/ contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	AT (WIEN)	participant	887˙811.00
18	TURKIYE BILIMSEL VE TEKNOLOJIK ARASTIRMA KURUMU TURKIYE BILIMSEL VE TEKNOLOJIK ARASTIRMA KURUMU Organization address address: Ataturk Bulvari 221 city: ANKARA postcode: 6100 website: www.tubitak.gov.tr contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	TR (ANKARA)	participant	824˙162.00
19	INSTITUTO DE SALUD CARLOS III INSTITUTO DE SALUD CARLOS III Organization address address: MONFORTE DE LEMOS 5 city: MADRID postcode: 28029 website: http://www.isciii.es contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	ES (MADRID)	participant	765˙898.00
20	EATRIS ERIC EATRIS ERIC Organization address address: DE BOELELAAN 1118 city: AMSTERDAM postcode: 1081 HZ website: www.eatris.eu contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	NL (AMSTERDAM)	participant	751˙476.00
21	ISTITUTO SUPERIORE DI SANITA ISTITUTO SUPERIORE DI SANITA Organization address address: Viale Regina Elena 299 city: ROMA postcode: 161 website: http://www.iss.it contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	IT (ROMA)	participant	723˙382.00
22	SCHWEIZERISCHER NATIONALFONDS ZUR FORDERUNG DER WISSENSCHAFTLICHEN FORSCHUNG SCHWEIZERISCHER NATIONALFONDS ZUR FORDERUNG DER WISSENSCHAFTLICHEN FORSCHUNG Organization address address: Wildhainweg 3 city: Bern postcode: 3012 website: www.snf.ch contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	CH (Bern)	participant	714˙035.00
23	ASSISTANCE PUBLIQUE HOPITAUX DE PARIS ASSISTANCE PUBLIQUE HOPITAUX DE PARIS Organization address address: 3 AVENUE VICTORIA city: PARIS postcode: 75000 website: http://www.aphp.fr contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	FR (PARIS)	participant	648˙480.00
24	VETENSKAPSRADET - SWEDISH RESEARCH COUNCIL VETENSKAPSRADET - SWEDISH RESEARCH COUNCIL Organization address address: VASTRA JARNVAGSGATAN 3 city: STOCKHOLM postcode: 111 64 website: www.vr.se contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	SE (STOCKHOLM)	participant	645˙050.00
25	UNIVERSITATSKLINIKUM HEIDELBERG UNIVERSITATSKLINIKUM HEIDELBERG Organization address address: IM NEUENHEIMER FELD 672 city: HEIDELBERG postcode: 69120 website: www.klinikum.uni-heidelberg.de contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	DE (HEIDELBERG)	participant	643˙196.00
26	UNIVERSITEIT MAASTRICHT UNIVERSITEIT MAASTRICHT Organization address address: Minderbroedersberg 4-6 city: MAASTRICHT postcode: 6200 MD website: http://www.maastrichtuniversity.nl contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	NL (MAASTRICHT)	participant	620˙221.00
27	EBERHARD KARLS UNIVERSITAET TUEBINGEN EBERHARD KARLS UNIVERSITAET TUEBINGEN Organization address address: GESCHWISTER-SCHOLL-PLATZ city: TUEBINGEN postcode: 72074 website: www.uni-tuebingen.de contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	DE (TUEBINGEN)	participant	611˙511.00
28	ACADEMISCH MEDISCH CENTRUM BIJ DE UNIVERSITEIT VAN AMSTERDAM ACADEMISCH MEDISCH CENTRUM BIJ DE UNIVERSITEIT VAN AMSTERDAM Organization address address: MEIBERGDREEF 15 city: AMSTERDAM postcode: 1105AZ website: www.amc.nl contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	NL (AMSTERDAM)	participant	583˙336.00
29	FONDS VOOR WETENSCHAPPELIJK ONDERZOEK-VLAANDEREN FONDS VOOR WETENSCHAPPELIJK ONDERZOEK-VLAANDEREN Organization address address: EGMONTSTRAAT 5 city: BRUSSEL postcode: 1000 website: www.fwo.be contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	BE (BRUSSEL)	participant	575˙425.00
30	FONDAZIONE REGIONALE PER LA RICERCA BIOMEDICA FONDAZIONE REGIONALE PER LA RICERCA BIOMEDICA Organization address address: PIAZZA CITTA DI LOMBARDIA 1 city: MILANO postcode: 20124 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	IT (MILANO)	participant	547˙900.00
31	FONDS ZUR FÖRDERUNG DER WISSENSCHAFTLICHEN FORSCHUNG FONDS ZUR FÖRDERUNG DER WISSENSCHAFTLICHEN FORSCHUNG Organization address address: SENSENGASSE 1 city: WIEN postcode: 1090 website: www.fwf.ac.at contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	AT (WIEN)	participant	524˙000.00
32	SUOMEN AKATEMIA SUOMEN AKATEMIA Organization address address: HAKANIEMENRANTA 6 city: HELSINKI postcode: 531 website: www.aka.fi contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	FI (HELSINKI)	participant	512˙750.00
33	NARODOWE CENTRUM BADAN I ROZWOJU NARODOWE CENTRUM BADAN I ROZWOJU Organization address address: UL. NOWOGRODZKA 47A city: WARSZAWA postcode: 00 695 website: www.ncbr.gov.pl contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	PL (WARSZAWA)	participant	499˙625.00
34	MINISTRY OF HEALTH MINISTRY OF HEALTH Organization address address: YIRMIYAHU 39 city: JERUSALEM postcode: 9101002 website: www.health.gov.il contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	IL (JERUSALEM)	participant	476˙942.00
35	MINISTRY OF EDUCATION YOUTH AND SPORTS MINISTRY OF EDUCATION YOUTH AND SPORTS Organization address address: Karmelitska 7 city: Prague postcode: 118 12 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	CZ (Prague)	participant	470˙400.00
36	UNIVERSITAETSKLINIKUM AACHEN UNIVERSITAETSKLINIKUM AACHEN Organization address address: Pauwelsstrasse 30 city: AACHEN postcode: 52074 website: www.ukaachen.de contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	DE (AACHEN)	participant	445˙550.00
37	VERKET FOR INNOVATIONSSYSTEM VERKET FOR INNOVATIONSSYSTEM Organization address address: MASTER SAMUELSG 56 city: STOCKHOLM postcode: 10158 website: www.vinnova.se contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	SE (STOCKHOLM)	participant	439˙300.00
38	ECRIN EUROPEAN CLINICAL RESEARCH INFRASTRUCTURE NETWORK ECRIN EUROPEAN CLINICAL RESEARCH INFRASTRUCTURE NETWORK Organization address address: 5 RUE WATT city: PARIS postcode: 75013 website: www.ecrin.org contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	FR (PARIS)	participant	418˙573.00
39	CONSORZIO PER VALUTAZIONI BIOLOGICHE E FARMACOLOGICHE CONSORZIO PER VALUTAZIONI BIOLOGICHE E FARMACOLOGICHE Organization address address: VIA NICOLO PUTIGNANI 178 city: BARI postcode: 70122 website: www.cvbf.net contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	IT (BARI)	participant	414˙662.00
40	UNIVERSIDAD POLITECNICA DE MADRID UNIVERSIDAD POLITECNICA DE MADRID Organization address address: CALLE RAMIRO DE MAEZTU 7 EDIFICIO RECTORADO city: MADRID postcode: 28040 website: www.upm.es contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	ES (MADRID)	participant	341˙571.00
41	THE HEALTH RESEARCH BOARD THE HEALTH RESEARCH BOARD Organization address address: LOWER BAGGOT STREET 73 city: DUBLIN postcode: 2 website: www.hrb.ie contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	IE (DUBLIN)	participant	332˙130.00
42	CHARITE - UNIVERSITAETSMEDIZIN BERLIN CHARITE - UNIVERSITAETSMEDIZIN BERLIN Organization address address: Chariteplatz 1 city: BERLIN postcode: 10117 website: www.charite.de contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	DE (BERLIN)	participant	319˙056.00
43	INSERM TRANSFERT SA INSERM TRANSFERT SA Organization address address: RUE WATT 7 city: PARIS postcode: 75013 website: www.inserm-transfert.fr contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	FR (PARIS)	participant	315˙000.00
44	FONDS NATIONAL DE LA RECHERCHE FONDS NATIONAL DE LA RECHERCHE Organization address address: 2 AVENUE DE L'UNIVERSITE city: ESCH-SUR-ALZETTE postcode: 4365 website: www.fnr.lu contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	LU (ESCH-SUR-ALZETTE)	participant	283˙492.00
45	FONDS DE LA RECHERCHE SCIENTIFIQUE- FNRS FONDS DE LA RECHERCHE SCIENTIFIQUE- FNRS Organization address address: RUE D'EGMONT 5 city: BRUXELLES postcode: 1000 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	BE (BRUXELLES)	participant	248˙260.00
46	ACIBADEM UNIVERSITESI ACIBADEM UNIVERSITESI Organization address address: ICERENKOY MAH. KAYISDAGI CAD. NO/32 ATASEHIR city: ISTANBUL postcode: 34752 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	TR (ISTANBUL)	participant	223˙365.00
47	NEMZETI KUTATASI FEJLESZTESI ES INNOVACIOS HIVATAL NEMZETI KUTATASI FEJLESZTESI ES INNOVACIOS HIVATAL Organization address address: KETHLY ANNA TER 1 city: BUDAPEST postcode: 1077 website: www.nih.gov.hu contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	HU (BUDAPEST)	participant	190˙025.00
48	MINISTERO DELL'ISTRUZIONE, DELL'UNIVERSITA' E DELLA RICERCA MINISTERO DELL'ISTRUZIONE, DELL'UNIVERSITA' E DELLA RICERCA Organization address address: Via Michele Carcani 61 city: ROMA postcode: 153 website: www.istruzione.it contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	IT (ROMA)	participant	185˙086.00
49	INFRAFRONTIER GMBH INFRAFRONTIER GMBH Organization address address: INGOLSTADTER LANDSTRASSE 1 city: NEUHERBERG postcode: 85764 website: www.infrafrontier.eu contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	DE (NEUHERBERG)	participant	182˙756.00
50	FONDAZIONE PER LA RICERCA FARMACOLOGICA GIANNI BENZI ONLUS FONDAZIONE PER LA RICERCA FARMACOLOGICA GIANNI BENZI ONLUS Organization address address: VIA ABATE EUSTASIO 30 city: VALENZANO BARI postcode: 70010 website: www.benzifoundation.org contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	IT (VALENZANO BARI)	participant	178˙255.00
51	TEDDY - EUROPEAN NETWORK OF EXCELLENCE FOR PAEDIATRIC CLINICAL RESEARCH TEDDY - EUROPEAN NETWORK OF EXCELLENCE FOR PAEDIATRIC CLINICAL RESEARCH Organization address address: VIA LUIGI PORTA 14 city: PAVIA postcode: 231261 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	IT (PAVIA)	participant	173˙113.00
52	HELIOS DR. HORST SCHMIDT KLINIKEN WIESBADEN GMBH HELIOS DR. HORST SCHMIDT KLINIKEN WIESBADEN GMBH Organization address address: LUDWIG ERHARD STRASSE 100 city: WIESBADEN postcode: 65199 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	DE (WIESBADEN)	participant	167˙107.00
53	REGIONE TOSCANA REGIONE TOSCANA Organization address address: Palazzo Strozzi Sacrati - Piazza del Duomo 10 city: FIRENZE postcode: 50122 website: www.regione.toscana.it contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	IT (FIRENZE)	participant	152˙400.00
54	LUDWIG BOLTZMANN GESELLSCHAFT GMBH LUDWIG BOLTZMANN GESELLSCHAFT GMBH Organization address address: NUSSDORFER STRASSE 64 6 STOCK city: WIEN postcode: 1090 website: www.lbg.ac.at contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	AT (WIEN)	participant	144˙410.00
55	FUNDACAO PARA A CIENCIA E A TECNOLOGIA FUNDACAO PARA A CIENCIA E A TECNOLOGIA Organization address address: AVENIDA D CARLOS I 126 city: LISBOA postcode: 1249 074 website: www.fct.pt contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	PT (LISBOA)	participant	143˙325.00
56	BLACKSWAN FOUNDATION BLACKSWAN FOUNDATION Organization address address: CHEMIN DE LA RIAZ 11 city: VUARRENS postcode: 1418 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	CH (VUARRENS)	participant	136˙412.00
57	VIESOJI ISTAIGA VILNIAUS UNIVERSITETO LIGONINE SANTAROS KLINIKOS VIESOJI ISTAIGA VILNIAUS UNIVERSITETO LIGONINE SANTAROS KLINIKOS Organization address address: SANTARISKIU G 2 city: VILNIUS postcode: 8661 website: www.santa.lt contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	LT (VILNIUS)	participant	133˙364.00
58	SLOVENSKA AKADEMIA VIED SLOVENSKA AKADEMIA VIED Organization address address: STEFANIKOVA 49 city: BRATISLAVA postcode: 814 38 website: www.psav.sav.sk contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	SK (BRATISLAVA)	participant	127˙005.00
59	UNIVERSITAETSKLINIKUM FREIBURG UNIVERSITAETSKLINIKUM FREIBURG Organization address address: HUGSTETTER STRASSE 49 city: FREIBURG postcode: 79106 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	DE (FREIBURG)	participant	126˙584.00
60	ST. ANNA KINDERKREBSFORSCHUNG ST. ANNA KINDERKREBSFORSCHUNG Organization address address: ZIMMERMANNPLATZ 10 city: WIEN postcode: 1090 website: www.ccri.at/science contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	AT (WIEN)	participant	113˙610.00
61	Lietuvos mokslo taryba Lietuvos mokslo taryba Organization address address: Gedimino 3 city: Vilnius postcode: LT-01103 website: http://www.lmt.lt/ contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	LT (Vilnius)	participant	99˙388.00
62	INSTYTUT POMNIK CENTRUM ZDROWIA DZIECKA INSTYTUT POMNIK CENTRUM ZDROWIA DZIECKA Organization address address: Aleja Dzieci Polskich 20 city: WARSZAWA postcode: 4730 website: www.czd.pl contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	PL (WARSZAWA)	participant	87˙155.00
63	KATHOLIEKE UNIVERSITEIT LEUVEN KATHOLIEKE UNIVERSITEIT LEUVEN Organization address address: OUDE MARKT 13 city: LEUVEN postcode: 3000 website: www.kuleuven.be contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	BE (LEUVEN)	participant	85˙037.00
64	WARSZAWSKI UNIWERSYTET MEDYCZNY WARSZAWSKI UNIWERSYTET MEDYCZNY Organization address address: UL. ZWIRKI I WIGURY 61 city: WARSZAWA postcode: 02 091 website: www.wum.edu.pl contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	PL (WARSZAWA)	participant	81˙255.00
65	ISTITUTO ORTOPEDICO RIZZOLI ISTITUTO ORTOPEDICO RIZZOLI Organization address address: VIA DI BARBIANO 1/10 city: BOLOGNA postcode: 40136 website: www.ior.it contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	IT (BOLOGNA)	participant	77˙661.00
66	GREAT ORMOND STREET HOSPITAL FOR CHILDREN NHS FOUNDATION TRUST GREAT ORMOND STREET HOSPITAL FOR CHILDREN NHS FOUNDATION TRUST Organization address address: GREAT ORMOND STREET city: LONDON postcode: WC1N 3JH website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	UK (LONDON)	participant	76˙728.00
67	THE UNIVERSITY OF LIVERPOOL THE UNIVERSITY OF LIVERPOOL Organization address address: BROWNLOW HILL 765 FOUNDATION BUILDING city: LIVERPOOL postcode: L69 7ZX website: www.liverpool.ac.uk contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	UK (LIVERPOOL)	participant	69˙711.00
68	UNIVERSITY OF NEWCASTLE UPON TYNE UNIVERSITY OF NEWCASTLE UPON TYNE Organization address address: KINGS GATE city: NEWCASTLE UPON TYNE postcode: NE1 7RU website: http://www.ncl.ac.uk/ contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	UK (NEWCASTLE UPON TYNE)	participant	66˙412.00
69	CONSORCIO CENTRO DE INVESTIGACION BIOMEDICA EN RED M.P. CONSORCIO CENTRO DE INVESTIGACION BIOMEDICA EN RED M.P. Organization address address: CALLE MONFORTE DE LEMOS 5 city: MADRID postcode: 28029 website: www.ciberisciii.es contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	ES (MADRID)	participant	61˙853.00
70	SOTSIAALMINISTEERIUM SOTSIAALMINISTEERIUM Organization address address: Suur-Ameerika 1 city: TALLINN postcode: 10122 website: http://www.sm.ee/ contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	EE (TALLINN)	participant	55˙575.00
71	HACETTEPE UNIVERSITESI HACETTEPE UNIVERSITESI Organization address address: HACETTEPE UNIVERSITESI BEYTEPE KAMPUSU REKTORLUK BINASI city: CANKAYA ANKARA postcode: 6800 website: www.hacettepe.edu.tr contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	TR (CANKAYA ANKARA)	participant	51˙271.00
72	SERVICIO MADRILENO DE SALUD SERVICIO MADRILENO DE SALUD Organization address address: PLAZA CARLOS TRIAS BERTRAN 7 city: MADRID postcode: 28020 website: http://cort.as/10Yf contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	ES (MADRID)	participant	48˙405.00
73	GDANSKI UNIWERSYTET MEDYCZNY GDANSKI UNIWERSYTET MEDYCZNY Organization address address: ULICA M SKLODOWSKIEJ CURIE 3A city: GDANSK postcode: 80210 website: http://www.amg.gda.pl contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	PL (GDANSK)	participant	43˙840.00
74	THE NEWCASTLE UPON TYNE HOSPITALS NHS FOUNDATION TRUST THE NEWCASTLE UPON TYNE HOSPITALS NHS FOUNDATION TRUST Organization address address: FREEMAN HOSPITAL, HIGH HEATON city: NEWCASTLE-UPON-TYNE postcode: NE7 7DN website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	UK (NEWCASTLE-UPON-TYNE)	participant	42˙011.00
75	CENTRE DE LUTTE CONTRE LE CANCER LEON BERARD CENTRE DE LUTTE CONTRE LE CANCER LEON BERARD Organization address address: RUE LAENNEC 28 city: LYON postcode: 69373 website: www.lyon.fnclcc.fr contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	FR (LYON)	participant	28˙061.00
76	ERASMUS UNIVERSITAIR MEDISCH CENTRUM ROTTERDAM ERASMUS UNIVERSITAIR MEDISCH CENTRUM ROTTERDAM Organization address address: DR MOLEWATERPLEIN 40 city: ROTTERDAM postcode: 3015 GD website: www.erasmusmc.nl contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	NL (ROTTERDAM)	participant	24˙622.00
77	IMAGINE INSTITUT DES MALADIES GENETIQUES NECKER ENFANTS MALADES FONDATION IMAGINE INSTITUT DES MALADIES GENETIQUES NECKER ENFANTS MALADES FONDATION Organization address address: 24 BD DU MONTPARNASSE city: PARIS 15 postcode: 75015 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	FR (PARIS 15)	participant	23˙537.00
78	AZIENDA OSPEDALIERA UNIVERSITARIA SENESE AZIENDA OSPEDALIERA UNIVERSITARIA SENESE Organization address address: STRADA DELLE SCOTTE 14 city: SIENA postcode: 53100 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	IT (SIENA)	participant	21˙223.00
79	GENIKI GRAMMATIA EREVNAS KAI TECHNOLOGIAS GENIKI GRAMMATIA EREVNAS KAI TECHNOLOGIAS Organization address address: Mesogeion Avenue 14-18 city: ATHENS postcode: 11510 website: www.gsrt.gr contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	EL (ATHENS)	participant	20˙658.00
80	INSTITUTO NACIONAL DE SAUDE DR. RICARDO JORGE INSTITUTO NACIONAL DE SAUDE DR. RICARDO JORGE Organization address address: AVENIDA PADRE CRUZ city: LISBOA postcode: 1600 560 website: http://www.insa.pt contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	PT (LISBOA)	participant	14˙026.00
81	AZIENDA OSPEDALIERO UNIVERSITARIA PISANA AZIENDA OSPEDALIERO UNIVERSITARIA PISANA Organization address address: VIA ROMA 67 city: PISA postcode: 56123 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	IT (PISA)	participant	12˙311.00
82	HOPITAUX UNIVERSITAIRES DE STRASBOURG HOPITAUX UNIVERSITAIRES DE STRASBOURG Organization address address: PLACE DE L HOPITAL 1 city: STRASBOURG CEDEX postcode: 67091 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	FR (STRASBOURG CEDEX)	participant	11˙900.00
83	VALSTS IZGLITIBAS ATTISTIBAS AGENTURA VALSTS IZGLITIBAS ATTISTIBAS AGENTURA Organization address address: VALNU IELA 1 city: RIGA postcode: 1050 website: www.viaa.gov.lv contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	LV (RIGA)	participant	10˙185.00
84	ASS FRANCAISE CONTRE LES MYOPATHIES ASS FRANCAISE CONTRE LES MYOPATHIES Organization address address: 47-83 47 BOULEVARD DE L'HOPITAL, INSTITUT DE MYOLO city: PARIS postcode: 75013 website: n.a. contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	FR (PARIS)	participant	5˙162.00
85	EUROPEAN ORGANISATION FOR RESEARCH AND TREATMENT OF CANCER AISBL EUROPEAN ORGANISATION FOR RESEARCH AND TREATMENT OF CANCER AISBL Organization address address: Avenue E. Mounier 83 city: Brussels postcode: 1200 website: www.eortc.be contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	BE (Brussels)	participant	5˙162.00
86	CANADIAN INSTITUTES OF HEALTH RESEARCH CANADIAN INSTITUTES OF HEALTH RESEARCH Organization address address: ELGIN STREET 9TH FLOOR ADDRESS LOCATOR 4809A 160 city: OTTAWA ONTARIO postcode: K1T 4H8 website: www.cihr-irsc.gc.ca contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	CA (OTTAWA ONTARIO)	participant	0.00
87	DEUTSCHE FORSCHUNGSGEMEINSCHAFT DEUTSCHE FORSCHUNGSGEMEINSCHAFT Organization address address: Kennedyallee 40 city: BONN postcode: 53175 website: www.dfg.de contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	DE (BONN)	participant	0.00
88	FONDS DE RECHERCHE DU QUEBEC - SANTE FONDS DE RECHERCHE DU QUEBEC - SANTE Organization address address: RUE SHERBROOKE OUEST 500 city: MONTREAL QUEBEC postcode: H3A3C6 website: www.frsq.gouv.qc.ca contact info title: n.a. name: n.a. surname: n.a. function: n.a. email: n.a. telephone: n.a. fax: n.a.	CA (MONTREAL QUEBEC)	participant	0.00

Map

Project 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.

Publications

List of publications.
year	authors and title	journal	last update
2020	Annika Jacobsen, Rajaram Kaliyaperumal, Luiz Olavo Bonino da Silva Santos, Barend Mons, Erik Schultes, Marco Roos, Mark Thompson A Generic Workflow for the Data FAIRification Process published pages: 56-65, ISSN: 2641-435X, DOI: 10.1162/dint_a_00028	Data Intelligence 2/1-2	2020-04-25
2020	Annalisa Landi, Mark Thompson, Viviana Giannuzzi, Fedele Bonifazi, Ignasi Labastida, Luiz Olavo Bonino da Silva Santos, Marco Roos The â€œAâ€ of FAIR â€“ As Open as Possible, as Closed as Necessary published pages: 47-55, ISSN: 2641-435X, DOI: 10.1162/dint_a_00027	Data Intelligence 2/1-2	2020-04-25
2020	Annika Jacobsen, Ricardo de Miranda Azevedo, Nick Juty, Dominique Batista, Simon Coles, Ronald Cornet, MÃ©lanie Courtot, MercÃ¨ Crosas, Michel Dumontier, Chris T. Evelo, Carole Goble, Giancarlo Guizzardi, Karsten Kryger Hansen, Ali Hasnain, Kristina Hettne, Jaap Heringa, Rob W.W. Hooft, Melanie Imming, Keith G. Jeffery, Rajaram Kaliyaperumal, Martijn G. Kersloot, Christine R. Kirkpatrick, Tobias K FAIR Principles: Interpretations and Implementation Considerations published pages: 10-29, ISSN: 2641-435X, DOI: 10.1162/dint_r_00024	Data Intelligence 2/1-2	2020-04-25

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