We are a consortium consisting of five European patient organisations (conjoint under the ECHDO umbrella), a communication/PR-consultancy, and the German National Registry for CHD. In 2007 we successfully applied for a project within the 7th EU Framework Programme (FP7) that establishes a European web-based information and communication platform that should help to build up a large and powerful European network on congenital heart defects. The project should horizontally and vertically crosslink patients, parents, physicians, scientists, medical organisations etc., i.e. all concerned stakeholders. We intend an increased spirit of co-operation as well as strengthening science and research in this area. Our project called Corience started in February 2008. The website www.corience.org was officially launched in September 2008.
Corience provides a comprehensible and target group optimised supply of information and initiates discussion and dialogue between all groups. Background information about new medical research is processed in close cooperation between scientists, physicians, editors, patients and parents. The CoHD platform also provides media-oriented elements such as news, interviews, fact sheets etc.
The website will be offered in at least four European languages. Information workshops for all concerned groups are arranged in order to foster dialogue and knowledge-transfer. We also organize press conferences in order to inform the public, politics, non-governmental organisations etc.
We will present our concept, strategy, stage of work, and our vision.