Rare cardiac diseases can present throughout a person’s life and are mostly genetic. These conditions are characterised by a wide range of symptoms and signs that vary not only from disease to disease but also from patient to patient. All these cardiac diseases carry a unique susceptibility to sudden death at a young age, usually occurring in otherwise healthy people.
The GUARD-HEART network has identified the following thematic areas: familial electrical diseases, familial cardiomyopathies, congenital heart defects and other rare cardiac diseases. These themes are based on the clinical guidelines of the European Society of Cardiology (ESC), the International Classification of Diseases (ICD10) and ORPHANET.
ERN GUARD-HEART is seeking to strengthen coordination of expertise and resources to facilitate pooling of multidisciplinary knowledge which will be mapped and disseminated to the lay public.
Healthcare services will be provided through a shared eHealth platform. This will ensure wider access to expertise for patients and healthcare professionals around Europe. By fostering closer cooperation between experts, new scientific knowledge will be acquired and shared to support the development of new diagnostic and therapeutic procedures, and to identify new rare cardiac diseases.