Obiettivo There are at least 6000 to 7000 distinct rare diseases, the great majority of them being of genetic origin. Although individually rare, taken together, rare diseases affect at least 20 million of persons in Europe. They represent a major issue in health care since a large percentage of these diseases lead to a significant decrease of life expectancy, and most of them cause chronic illness with a large impact on quality of life and the health care system.Therefore further research on rare diseases is badly needed but is hampered by lack of resources at several levels.(1) Few scientists work on one specific disease.(2) There are few patients scattered over a large geographic area, causing difficulties to gather cohorts required for studies.(3) Usually existing databases and material collections are local, small, and not accessible or standardised.(4) Diseases often have complex clinical phenotypes and require interdisciplinary approaches to treatment and interdisciplinary cooperation for research.Due to the small number of patients affected by a specific rare disease and fragmentation of research, efforts in each individual European country are obviously limited in objectives and power. Therefore rare diseases are a prime example of a research area that could strongly profit from coordination on a transnational scale. The European research area should be enabled to realize its potential by reorganizing and combining scientific expertise, research infrastructure, well defined patient cohorts and biological material. Nine partners have thus decided to join their efforts to overcome the inherent difficulties of research on rare diseases. The general goal E-Rare is to coordinate existing programmes and to prepare joint and strategic activities to overcome some of the limitations imposed by scattered funding and fragmentation between national research programmes. Campo scientifico natural sciencescomputer and information sciencesdatabases Programma(i) FP6-COORDINATION - Support for the coordination of activities: specific programme strengthening the foundations of the European Research Area under the Sixth Framework Programme 2002-2006 (FP6) Argomento(i) COOR-1.1 - Networking of national or regional programmes or parts of programmes; actors: public authorities, research agencies, open call for proposals (ERA-NETs) Invito a presentare proposte ERA-NET/1/CA-SSA Vedi altri progetti per questo bando Meccanismo di finanziamento CA - Coordination action Coordinatore INSTITUT NATIONAL DE LA SANTÉ ET DE LA RECHERCHE MÉDICALE Contributo UE Nessun dato Indirizzo 101 rue de Tolbiac PARIS Francia Mostra sulla mappa Collegamenti Sito web Opens in new window Costo totale Nessun dato Partecipanti (9) Classifica in ordine alfabetico Classifica per Contributo UE Espandi tutto Riduci tutto DEUTSCHE ZENTRUM FÜR LUFT- UND RAUMFAHRT E.V. (GERMAN AEROSPACE CENTER) Germania Contributo UE Nessun dato Indirizzo Heinrich-Konen-Str. 1 BONN Mostra sulla mappa Collegamenti Sito web Opens in new window Costo totale Nessun dato GERMAN FEDERAL MINISTRY OF EDUCATION AND RESEARCH Germania Contributo UE Nessun dato Indirizzo Hannoversche Str. 28-30 BERLIN Mostra sulla mappa Costo totale Nessun dato FUNDACIÓN PARA LA COOPERACIÓN Y SALUD INTERNACIONAL CARLOS III Spagna Contributo UE Nessun dato Indirizzo Sinesio Delgado, 6 MADRID Mostra sulla mappa Collegamenti Sito web Opens in new window Costo totale Nessun dato FONDS NATIONAL DE LA RECHERCHE SCIENTIFIQUE Belgio Contributo UE Nessun dato Indirizzo Rue d'Egmont, 5 BRUSSELS Mostra sulla mappa Collegamenti Sito web Opens in new window Costo totale Nessun dato CHIEF SCIENTIST OFFICE, MINISTRY OF HEALTH Israele Contributo UE Nessun dato Indirizzo BEN TABAI STREET 2 1176 JERUSALEM Mostra sulla mappa Collegamenti Sito web Opens in new window Costo totale Nessun dato ISTITUTO SUPERIORE DI SANITA Italia Contributo UE Nessun dato Indirizzo Viale Regina Elena, 299 ROME Mostra sulla mappa Collegamenti Sito web Opens in new window Costo totale Nessun dato THE NETHERLANDS ORGANISATION FOR HEALTH RESEARCH AND DEVELOPMENT Paesi Bassi Contributo UE Nessun dato Indirizzo Laan van Nieuw Oost Indie 334, kamer 456 93245 THE HAGUE Mostra sulla mappa Collegamenti Sito web Opens in new window Costo totale Nessun dato SCIENTIFIC AND TECHNICAL RESEARCH COUNCIL OF TURKEY Turchia Contributo UE Nessun dato Indirizzo Ataturk Bulvari 220, Kavaklidere ANKARA Mostra sulla mappa Collegamenti Sito web Opens in new window Costo totale Nessun dato AGENCE NATIONAL DE LA RECHERCHE Francia Contributo UE Nessun dato Indirizzo 212 rue de Bercy PARIS Mostra sulla mappa Collegamenti Sito web Opens in new window Costo totale Nessun dato