E-RARE-2

ERA-Net on Rare Diseases

 Coordinatore 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

 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

Mappa


 Word cloud

Esplora la "nuvola delle parole (Word Cloud) per avere un'idea di massima del progetto.

stakeholders    million    special    successful    portal    scientists    calls    disease    joint    countries    mechanisms    treatments    patient    diseases    clinical    rare    diagnostics    fragmentation    networks    registries    transnational    multidisciplinary    coordinated    exchange    strengthen   

 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.

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