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Establishment of a European parent- and patient-oriented information and communication platform on Congenital Heart Defects

Objective

With this support action we intend the establishment of a European parent- and patient-oriented, web-based information and communication platform that helps to build up a large European network on congenital heart defects (CHD PLATFORM). The aim of this platform is to vertically cross-link medical organisations and facilities, physicians and scientists to patients, parents, patients’/parents’-organisations, and in addition to increase public awareness of the growing number of children/patients in our society suffering from congenital heart defects. The intended CHD platform will provide a comprehensible and target group optimised supply of information and should initiate discussion and dialogue between all groups. Background information about new medical research should be processed in close cooperation between scientists, physicians, editors, patients and parents. The platform will also provide media-oriented events such as news, interviews, fact sheets etc. The website is planned to be offered at least partially in different European languages. In addition, information workshops for all concerned groups should be arranged for dialogue and knowledge-transfer, and press conferences launched to inform the public, politics, non-governmental organisations etc. With the establishment of CHD PLATFORM we intend • an intensified dissemination of knowledge and information • an increased spirit of co-operation • the consideration of patients’ and parents’ opinions and points of view • building up trust within patient and parent communities, and strengthening the willingness to participate in research studies • a higher significance and outcome of medical research and clinical studies CHD PLATFORM would support other projects that are intended in the FP7-Health Programme (2007 B, Calls 2.4.2-4 and 4.2-1, see below) as accompanying measure, and promote medical research in Europe concerning this group of patients which continuously grows in size throughout the world.

Field of science

  • /humanities/languages and literature/languages - general

Call for proposal

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

Funding Scheme

CSA-SA - Support actions

Coordinator

NATIONALES REGISTER FUER ANGEBORENE HERZFEHLER EV
Address
Augustenburger Platz 1
13353 Berlin
Germany
Activity type
Other
EU contribution
€ 196 450,05
Administrative Contact
Birgit Wilms (Ms.)

Participants (6)

WIEBKE LESCH STRATEGISCHE KOMMUNIKATION
Germany
EU contribution
€ 116 594
Address
Botzowstrasse 25
10407 Berlin
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
Administrative Contact
Wiebke Lesch (Prof.)
FUNDACION MENUDOS CORAZONES
Spain
EU contribution
€ 80 945,50
Address
Calle Valdesangil 19
28039 Madrid
Activity type
Other
Administrative Contact
Escudero Maria (Ms.)
FORENINGEN FOR HJERTESYKE BARN
Norway
EU contribution
€ 124 672,25
Address
Sandakerveien 99
0404 Oslo
Activity type
Public bodies (excluding Research Organisations and Secondary or Higher Education Establishments)
Administrative Contact
Marte A. Jystad (Ms.)
HJAERTEBARNSFOERENINGEN
Sweden
EU contribution
€ 105 603,06
Address
Drakenbergsg 47
10272 Stockholm
Activity type
Other
Administrative Contact
Peter Nordqvist (Mr.)
BUNDESVERBAND HERZKRANKE KINDER EV
Germany
EU contribution
€ 90 687,26
Address
Kasinostrasse 66
52066 Aachen
Activity type
Other
Administrative Contact
Hermine Nock (Ms.)
Childrens Heart Federation
United Kingdom
EU contribution
€ 30 047,88
Address
Great Eastern Street 2-4
EC2A 3NW London
Activity type
Other
Administrative Contact
Anne Keatley-Clarke (Ms.)