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... Fields of science medical and health scienceshealth sciencespublic healthsocial sciencessociologydemographymortalitynatural sciencescomputer and information sciencesinternetnatural sciencescomputer and information sciencesdatabasesmedical and health sciencesbasic medicinepharmacology and pharmacypharmaceutical drugs Keywords clinical trial innovative therapy orphan drugs Programme(s) FP6-LIFESCIHEALTH - Life sciences, genomics and biotechnology for health: Thematic Priority 1 under the Focusing and Integrating Community Research programme 2002-2006. Topic(s) LSH-2002-2.1.1-12 - Coordination of rare disease research in Europe, with various stakeholders from research, SMEs and patient organisations Call for proposal FP6-2002-LIFESCIHEALTH See other projects for this call Funding Scheme SSA - Specific Support Action Coordinator INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE EU contribution No data Address 101 Rue de Tolbiac PARIS France See on map Total cost No data Participants (17) Sort alphabetically Sort by EU Contribution Expand all Collapse all UNIVERSITY COLLEGE CORK, NATIONAL UNIVERSITY OF IRELAND, CORK Ireland EU contribution No data Address Western Road CORK See on map Total cost No data IRCCS - OSPEDALE CASA SOLLIEVO DELLA SOFFERENZA Italy EU contribution No data Address Viale Cappuccini 1 SAN GIOVANNI ROTONDO See on map Total cost No data UNIVERSITAT POMPEU FABRA Spain EU contribution No data Address ¨Placa de la Merce, 12 BARCELONA See on map Total cost No data THE VICTORIA UNIVERSITY OF MANCHESTER United Kingdom EU contribution No data Address Oxford Road MANCHESTER See on map Total cost No data KATHOLIEKE UNIVERSITEIT LEUVEN Belgium EU contribution No data Address Oude Markt 13 LEUVEN See on map Total cost No data EUROPEAN ORGANIZATION FOR RARE DISEASES France EU contribution No data Address Rue Didot 102 PARIS See on map Total cost No data ACADEMISCH ZIEKENHUIS BIJ DE UNIVERSITEIT VAN AMSTERDAM Netherlands EU contribution No data Address Meibergdreef 9 22700 AMSTERDAM See on map Total cost No data UNIVERSITY OF TURKU Finland EU contribution No data Address N/A TURKU See on map Total cost No data LES ENTREPRISES DU MEDICAMENT France EU contribution No data Address Rue de la Faisanderie, 88 PARIS See on map Total cost No data VERENIGING SAMENWERKENDE OUDER- EN PATIENTENORGANISATIES Netherlands EU contribution No data Address Vredehofstraat, 31 SOESTDIJK See on map Total cost No data EUROPEAN PLATFORM FOR PATIENTS'ORGANISATIONS, SCIENCE AND INDUSTRY Belgium EU contribution No data Address Avenue de Tervuren, 402 BRUSSELS See on map Total cost No data EUROPEAN FEDERATION OF PHARMACEUTICAL INDUSTRIES ASSOCIATIONS Belgium EU contribution No data Address Rue du Trone 108 BRUXELLES See on map Total cost No data INSTITUTO DE GENETICA MEDICA JACINTO MAGALHAES Portugal EU contribution No data Address Praca Pedro Nunes 88 PORTO See on map Total cost No data MEDIZINISCHE HOCHSCHULE HANNOVER Germany EU contribution No data Address Carl-Neuberg-Strasse 1 HANNOVER See on map Total cost No data EUROPABIO Belgium EU contribution No data Address Avenue de l'Armée, 6 BRUSSELS See on map Total cost No data MEDIZINISCHE UNIVERSITAET WIEN Austria EU contribution No data Address Spitalgasse, 23 WIEN See on map Total cost No data VERENIGING VOOR CHRISTELIJK HOGER ONDERWIJS WETENSCHAPPELIJK ONDERZOEK EN PATIENTENZORG Netherlands EU contribution No data Address De Boelelaan 1105 AMSTERDAM See on map Total cost No data
