E-RARE-2

ERA-Net on Rare Diseases

Coordinatore	INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM)    more  Organization address address: 101 Rue de Tolbiac city: PARIS postcode: 75654 contact info Titolo: Dr. Nome: Daria Cognome: Julkowska Email: send email Telefono: +33 1 58 14 22 84 Fax: +33 1 58 14 22 88
Nazionalità Coordinatore	France [FR]
Sito del progetto	http://www.e-rare.eu/
Totale costo	2˙920˙521 €
EC contributo	1˙999˙680 €
Programma	FP7-HEALTH Specific Programme "Cooperation": Health
Code Call	FP7-ERANET-2010-RTD
Funding Scheme	CSA-CA
Anno di inizio	2010
Periodo (anno-mese-giorno)	2010-10-01   -   2014-11-30

 Partecipanti

#	participant	country	role	EC contrib. [€]
1	INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM)  Organization address address: 101 Rue de Tolbiac city: PARIS postcode: 75654 contact info Titolo: Dr. Nome: Daria Cognome: Julkowska Email: send email Telefono: +33 1 58 14 22 84 Fax: +33 1 58 14 22 88	FR (PARIS)	coordinator	548˙938.50
2	DEUTSCHES ZENTRUM FUER LUFT - UND RAUMFAHRT EV  Organization address address: Linder Hoehe city: KOELN postcode: 51147 contact info Titolo: Ms. Nome: Silke Cognome: Kraus Email: send email Telefono: +49 228 3821 207 Fax: +49 228 3821 107	DE (KOELN)	participant	316˙767.90
3	INSTITUTO DE SALUD CARLOS III  Organization address address: CALLE SINESIO DELGADO 4-6 city: MADRID postcode: 28029 contact info Titolo: Mr. Nome: Pedro Cognome: Cortegoso Email: send email Telefono: +34 918223294 Fax: +34 913877809	ES (MADRID)	participant	192˙658.00
4	AGENCE NATIONALE DE LA RECHERCHE  Organization address address: 50 avenue Daumesnil city: PARIS postcode: 75012 contact info Titolo: Mrs. Nome: Sophie Cognome: Despinoy Email: send email Telefono: +33 1 73 54 82 80	FR (PARIS)	participant	190˙222.30
5	ISTITUTO SUPERIORE DI SANITA  Organization address address: Viale Regina Elena 299 city: ROMA postcode: 161 contact info Titolo: Dr. Nome: Rosa Maria Cognome: Martoccia Email: send email Telefono: +39 06 49902688 Fax: +39 06 49903007	IT (ROMA)	participant	187˙851.50
6	FONDS NATIONAL DE LA RECHERCHE SCIENTIFIQUE  Organization address address: Rue d'Egmont 5 city: BRUXELLES postcode: 1050 contact info Titolo: Ms. Nome: Freia Cognome: Van Hee Email: send email Telefono: +32 2 504 93 09 Fax: +32 2 504 92 79	BE (BRUXELLES)	participant	114˙153.90
7	MINISTRY OF HEALTH  Organization address address: 2 Ben Tabai Street city: JERUSALEM postcode: 93591 contact info Titolo: Dr. Nome: Zelina Cognome: Ben-Gershon Email: send email Telefono: +972 50 6242117 Fax: +972 2 6725833	IL (JERUSALEM)	participant	81˙962.00
8	THE NETHERLANDS ORGANISATION FOR HEALTH RESEARCH AND DEVELOPMENT  Organization address address: Laan Van Nieuw Oost Indie 334 city: DEN HAAG postcode: 2593CE contact info Titolo: Mr. Nome: Richard Cognome: Van Beekum Email: send email Telefono: 31703495125 Fax: 31703495100	NL (DEN HAAG)	participant	78˙564.50
9	KENTROU ELEGHOU & PROLIPSIS NOSIMATON  Organization address address: AGRAFON 3-5 city: MAROUSI postcode: 15123 contact info Titolo: Dr. Nome: Lia Cognome: Tzala Email: send email Telefono: 302105000000 Fax: 302105000000	EL (MAROUSI)	participant	75˙907.95
10	FUNDACAO PARA A CIENCIA E A TECNOLOGIA  Organization address address: AVENIDA D CARLOS I 126 city: LISBOA postcode: 1249-074 contact info Titolo: Dr. Nome: Anabela Cognome: Isidro Email: send email Telefono: +351 21 3911552	PT (LISBOA)	participant	50˙290.00
11	Nome Ente NON disponibile  Organization address address: SENSENGASSE 1 city: WIEN postcode: 1090 contact info Titolo: Dr. Nome: Stephanie Cognome: Resch Email: send email Telefono: +43 1 505 67 40 8201 Fax: +43 1 505 67 39	AT (WIEN)	participant	34˙055.88
12	GENIKI GRAMMATIA EREVNAS KAI TECHNOLOGIAS  Organization address address: Mesogeion Avenue 14-18 city: ATHENS postcode: 11510 contact info Titolo: Dr. Nome: Suzanne Cognome: Kolyva Email: send email Telefono: 302107000000 Fax: 302108000000	EL (ATHENS)	participant	32˙100.00
13	TURKIYE BILIMSEL VE TEKNOLOJIK ARASTIRMA KURUMU  Organization address address: Ataturk Bulvari 221 city: ANKARA postcode: 6100 contact info Titolo: Ms. Nome: Melike Cognome: Sevimli Email: send email Telefono: +90 312 468 5300 Fax: +90 312 427 4024	TR (ANKARA)	participant	31˙598.00
14	PECSI TUDOMANYEGYETEM - UNIVERSITY OF PECS  Organization address address: VASVARI PAL UTCA 4 city: PECS postcode: 7622 contact info Titolo: Ms. Nome: Edina Cognome: Kicsindi Email: send email Telefono: +3672501500 2474 Fax: 3672501605	HU (PECS)	participant	30˙943.50
15	Unitatea Executiva pentru Finantarea Invatamantului Superior, a Cercetarii, Dezvoltarii si Inovarii  Organization address address: Mendeleev Street 21-25 city: Bucharest postcode: 10362 contact info Titolo: Ms. Nome: Simona Cristina Cognome: Stoian Email: send email Telefono: 40213023893 Fax: 40213071911	RO (Bucharest)	participant	20˙826.48
16	MINISTERIO DA SAUDE - REPUBLICA PORTUGUESA  Organization address city: LISBOA postcode: 1049-062 contact info Titolo: Dr. Nome: José Cognome: Robalo Email: send email Telefono: 351218000000 Fax: 351218000000	PT (LISBOA)	participant	12˙840.00
17	BUNDESMINISTERIUM FUER BILDUNG UND FORSCHUNG  Organization address address: Heinemannstrasse 2 city: BONN postcode: 53175 contact info Titolo: Dr. Nome: Birgit Cognome: Wetterauer Email: send email Telefono: +49 30 18 57 5168 Fax: +49 30 185785168	DE (BONN)	participant	0.00
18	INSTITUTO NACIONAL DE SAUDE DR. RICARDO JORGE  Organization address address: AVENIDA PADRE CRUZ . city: LISBOA postcode: 1600 560 contact info Titolo: Mrs. Nome: Isabel Cognome: Carvalho Oliveira Email: send email Telefono: 351218000000	PT (LISBOA)	participant	0.00

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 Obiettivo del progetto (Objective)

'Rare diseases represent an important public-health issue, affecting 26-30 million persons across Europe, and a major challenge for research. The fragmentation of resources and knowledge for the 6000-8000 rare diseases and the lack of treatment for the majority of them necessitate a coordinated European approach to unravel the underlying molecular defects and pathophysiological mechanisms. The low number of affected patients requires transnational collaboration with multidisciplinary approaches to map prevalences, build patient registries, identify biomarkers, develop new diagnostics and finally perform clinical studies for the development of treatments. The successful linking of research funding organisations in E-Rare-1 and the subsequent exemplary joint funding activities have attested the need of, and the acknowledgment from, the research community for transnational funding of collaborative, multidisciplinary and ambitious projects on rare diseases. It has leveraged funding for rare disease research in countries without specific programmes for rare diseases and thus enabled the participation of researchers in these countries to transnational projects. The E-Rare-2 project aims at deepening and extending the cooperation among the E-Rare-1 and the five new partners by systematic exchange of information, yearly launching of joint calls, thorough assessment of the funding mechanisms and results of the funded research projects and, finally, strategic activities aiming at a sustainable development and extension of the network. Special attention will be given to the outreach and knowledge exchange with new member states, countries outside of Europe and key stakeholders/initiatives important for rare diseases. E-Rare-2 activities will thus further contribute to reducing fragmentation of research and resources through the enhanced coordination and transnational funding of excellent research on rare diseases, thereby shaping the European Research Area for rare diseases.'

Descrizione progetto (Article)

Research efforts need to be coordinated and available funds pooled to find out how rare diseases arise and affect humans. Scientists can build patient registries, find out how prevalent each disease is and find biological molecules that confirm the presence of the disease. This will allow for better diagnostics and treatments to be tested in clinical studies.

The EU-funded ?ERA-NET on rare diseases? (E-RARE-2) project is building on the work of its predecessor E-RARE-1 to strengthen rare disease research and funding networks. In particular, this second phase will focus on including New Member States (NMS), non-European countries and other important stakeholders and initiatives.

In 2011, the first call for joint, transnational research proposals resulted in funding of EUR 8.78 million for over 60 research groups from 13 consortia. The successful research bids covered a range of diseases and potential therapies, including stem cells, gene therapy and customised animal models.

The 2012 call is still open and is aimed at young, independent scientists. E-RARE-2 has identified research areas that need special attention, and this call addresses those topics specifically.

These research calls have demonstrated that scientists are keen to work together on rare conditions. To further strengthen these networks and to create awareness, E-RARE-2 uses various communication tools and it is also developing an online research portal. This portal will eventually become a forum for information exchange and a search engine to find collaborators.

With these successes to drive it forward, E-RARE-2 will continue to diversify its activities and increase funding commitment from new and existing funders.