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

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.