Corience

The German National Registry for Congenital Heart Defects coordinates Corience, a project funded by the European Union under its 7th Framework Programme for Research. Corience is an independent, objective and multi-faceted information portal dedicated to congenital heart defects. As well as hints and tips on how to make living with the condition a little easier, it also provides background medical information and up-to-date details on scientific studies.

It’s always a huge shock to families when they first hear the diagnosis of ‘congenital heart defect’, and a myriad of questions immediately swarm into their minds. How can the heart defect be treated? Will their child be able to live a normal life? Or will they have to accept restrictions? Corience provides answers to many questions that are asked about the condition. The site contains articles on sport, nutrition, quality of life, travel, drugs and sexuality, as well as explanations of particular heart defects and possible ways of treating them, and all the articles are supplemented by the latest research findings, lists of useful links, interviews with experts and personal stories recounted by patients and their families. The information and advice that is provided on www.corience.org is compiled by an international team of journalists and medical experts. The site is available in three languages: English, German and Spanish.

Corience was founded in 2008 by the German National Registry for Congenital Heart Defects, the European umbrella self-help organisation for patients suffering from the condition (ECHDO) and the Wiebke Lesch Communication Consultancy. Funding is guaranteed to 2010.