Gateway to Uncommon And Rare Diseases of the HEART

ended

Rare cardiac diseases are characterised by a wide diversity of symptoms and signs that vary not only from disease to disease but also from patient to patient suffering from the same disease. GUARD-HEART will be a broad thematic ERN, encompassing all rare cardiac diseases,conditions and procedures with a unifying objective: ‘Excellence in diagnostics and treatment of rare cardiac diseases throughout life’. It will accommodate the intensity of clinical symptoms and pathology concerning arrythmias (electrical diseases), cardiomyopathies, congenital heart diseases and other rare cardiac diseases in both adults and children. The mission of GUARD HEART is to facilitate access to highly specialised diagnosis and treatment of rare and complex heart diseases in both adult and paediatric patients across the European Union. GUARD HEART brings together, in its start-up phase, a geographically diverse group of 24 expert healthcare providers from 12 different Member States committed to patient-centred care, efficient practice based on evidence, knowledge sharing and education, and translational research. The initial focus will be on genetically transmitted heart disease and several specific procedures in paediatric patients. During the first year GUARD HEART will be open to other expert centres also with a focus on congenital heart disease and other (mainly non familial) rare cardiac diseases. By pooling knowledge and expertise, GUARD HEART aims to provide better, safer, more efficient healthcare to all European patients with rare and complex cardiac conditions on the basis of the best evidence and value available.