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European Networks of Centres of Expertise for CF (Cystic Fibrosis), LAM (Lymphangioleiomyomatosis), and LTX (Lung Transplantation)

Objective

European Centres of Expertise Networks for rare diseases have been identified by the European Commission as one important area of future activity in the attempt of achieving one of the main objectives across the EC endeavour of “Optimising the delivery of health care to European Citizens”. It is obvious that especially in rare diseases the joined forces of the experts networking throughout Europe are more likely than national services to meet the needs and expectations of patients. The construction and implementation of European networks of centres of expertise (ENCE) call for input from many different stakeholders: patients and doctors and other care team members, clinical researchers, health administration, and health insurers will have to be heard to come to a model of such networks that can easily be used as blueprint for most of the rare disorders. To achieve this goal first a mapping exercise of existing networks and elements needed for such networking has to be done. We plan to do so for three different rare entities, i.e. cystic fibrosis (CF), pulmonary lymphangioleiomyomatosis (LAM), and lung transplantation (LTX), having in common that they all comply with the EC definition of a rare disease. From the information gathered during this process the areas of activity and a detailed set of criteria for such European networks will be developed. These construction principles will be brought together in a blueprint to be used for other rare disorders. These criteria can then be used for certification, quality control, and funding of a European system of networks. Networking in this European sense will make the best possible use of resources already existing and remaining in the responsibility of the individual member states by interfacing and complementing these present and future elements. This will help the health care system partners to learn from the best and improve the quality of care to the best European level of expertise.

Field of science

  • /medical and health sciences/clinical medicine/transplantation

Call for proposal

FP7-HEALTH-2007-B
See other projects for this call

Funding Scheme

CSA-SA - Support actions

Coordinator

JOHANN WOLFGANG GOETHE-UNIVERSITAET FRANKFURT AM MAIN
Address
Theodor W Adorno Platz 1
60323 Frankfurt Am Main
Germany
Activity type
Higher or Secondary Education Establishments
EU contribution
€ 462 821
Administrative Contact
Rolf Draeger (Mr.)

Participants (7)

BELFAST HEALTH AND SOCIAL CARE TRUST
United Kingdom
EU contribution
€ 44 066
Address
Lisburn Road Belfast City Hospital A Floor
BT9 7AS Belfast
Activity type
Public bodies (excluding Research Organisations and Secondary or Higher Education Establishments)
Administrative Contact
Joseph Stuart Elborn (Prof.)
THE UNIVERSITY OF NOTTINGHAM
United Kingdom
EU contribution
€ 88 133
Address
University Park
NG7 2RD Nottingham
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Paul Cartledge (Mr.)
HOSPICES CIVILS DE LYON
France
EU contribution
€ 42 844
Address
Quai Des Celestins 3
69002 Lyon
Activity type
Public bodies (excluding Research Organisations and Secondary or Higher Education Establishments)
Administrative Contact
Odile Gelpi (Prof.)
MEDIZINISCHE HOCHSCHULE HANNOVER
Germany
EU contribution
€ 76 382
Address
Carl-neuberg-strasse 1
30625 Hannover
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Marion Seyffert (Ms.)
MEDIZINISCHE UNIVERSITAET WIEN
Austria
EU contribution
€ 39 413
Address
Spitalgasse 23
1090 Wien
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Ferdinand Mühlbacher (Prof.)
INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE
France
EU contribution
€ 87 893
Address
Rue De Tolbiac 101
75654 Paris
Activity type
Research Organisations
Administrative Contact
Mihaja Auguste (Ms.)
UNIVERZITA KARLOVA
Czechia
EU contribution
€ 15 758
Address
Ovocny Trh 560/5
116 36 Praha 1
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Ivana Funkova