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Platform of information services for the coordination of rare disease research with various stakeholders from research, SMEs and patient organisations and the coordination of early clinical trials

Objective

In the field of rare diseases, it is impossible to reach a critical mass of resources at national level. To achieve a European critical mass of experts and operational partners, all the proposed actions are based on the coordination and development of already existing and active networks and organisations across Europe: Orphanet, Eurordis, EPPOSI, EuropaBio, EBE. The project aims at developing information tools to address in a comprehensive and integrated approach the set of factors that currently affects research on rare diseases and its coordination. The specific objectives are: (1) to develop an information service, freely accessible on Internet, dedicated to research activities in the field of rare diseases and orphan medicinal products, including a database of research projects, funded at MS level and at the EU level, and a database of collections and research networks. (2) to develop services aiming at speeding up the enrolment of patients in clinical research. (3) to develop a database of research projects with development potential, to help scientists and Industry establish the necessary partnerships. (4) to organise a workshop with all stakeholders to discuss known bottlenecks and find solutions. This project is based on input from the following (1) an EU funded information service on rare diseases: Orphanet (www.orpha.net) (2) a European platform of Patients organization, Science and Industry (EPPOSI) which actively supports partnering activities. (3) an umbrella organization of patient support groups (Eurordis) involved in supporting research and regulatory activities. The project aims at establishing the platform of services in 11 European countries in the pilot phase in order to propose an extension to the 25 European countries in 2 years time. Ultimately, the goal is to convert scientific developments into diagnostic tools and therapies as quickly as possible...

Call for proposal

FP6-2002-LIFESCIHEALTH
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Coordinator

INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE
Address
101 Rue De Tolbiac
Paris
France

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Participants (17)

UNIVERSITY COLLEGE CORK, NATIONAL UNIVERSITY OF IRELAND, CORK
Ireland
Address
Western Road
Cork

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IRCCS - OSPEDALE CASA SOLLIEVO DELLA SOFFERENZA
Italy
Address
Viale Cappuccini 1
San Giovanni Rotondo

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UNIVERSITAT POMPEU FABRA
Spain
Address
¨Placa De La Merce, 12
Barcelona

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THE VICTORIA UNIVERSITY OF MANCHESTER
United Kingdom
Address
Oxford Road
Manchester

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KATHOLIEKE UNIVERSITEIT LEUVEN
Belgium
Address
Oude Markt 13
Leuven

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EUROPEAN ORGANIZATION FOR RARE DISEASES
France
Address
Rue Didot 102
Paris

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ACADEMISCH ZIEKENHUIS BIJ DE UNIVERSITEIT VAN AMSTERDAM
Netherlands
Address
Meibergdreef 9
22700 Amsterdam

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UNIVERSITY OF TURKU
Finland
Address
N/a
Turku

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LES ENTREPRISES DU MEDICAMENT
France
Address
Rue De La Faisanderie, 88
Paris

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VERENIGING SAMENWERKENDE OUDER- EN PATIENTENORGANISATIES
Netherlands
Address
Vredehofstraat, 31
Soestdijk

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EUROPEAN PLATFORM FOR PATIENTS'ORGANISATIONS, SCIENCE AND INDUSTRY
Belgium
Address
Avenue De Tervuren, 402
Brussels

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EUROPEAN FEDERATION OF PHARMACEUTICAL INDUSTRIES ASSOCIATIONS
Belgium
Address
Rue Du Trone 108
Bruxelles

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INSTITUTO DE GENETICA MEDICA JACINTO MAGALHAES
Portugal
Address
Praca Pedro Nunes 88
Porto

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MEDIZINISCHE HOCHSCHULE HANNOVER
Germany
Address
Carl-neuberg-strasse 1
Hannover

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EUROPABIO
Belgium
Address
Avenue De L'armée, 6
Brussels

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MEDIZINISCHE UNIVERSITAET WIEN
Austria
Address
Spitalgasse, 23
Wien

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VERENIGING VOOR CHRISTELIJK HOGER ONDERWIJS WETENSCHAPPELIJK ONDERZOEK EN PATIENTENZORG
Netherlands
Address
De Boelelaan 1105
Amsterdam

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