GUARD-HEART - European Reference Network for Rare Heart Diseases

Rare cardiac diseases can occur at any stage of life and most of these are genetically based. These conditions are characterized by a wide range of signs and symptoms that vary not only from disease to disease but also from patient to patient. All these conditions determine a susceptibility to sudden death in young age, generally in presumed healthy subjects.
The ERN GUARD-HEART has identified the following thematic areas: familial electrical diseases, familial cardiomyopathies, congenital heart malformations and other rare cardiac diseases. These categories were created based on the European Society of Cardiology (ESC) international guidelines, the International Classification of Diseases (ICD10) and the list of rare diseases contained in ORPHANET.
The ERN GUARD-HEART aims to strengthen the coordination of professional skills and available resources to facilitate the sharing of multidisciplinary knowledge, which will then be mapped on the European territory and disseminated to all stakeholders in this sector.
The dissemination of knowledge will take place through the use of computing platforms dedicated to health. These will allow patients and healthcare professionals across Europe to access the the expertise of experienced professionals in the files. Through the strengthening of international cooperation between experts, the aim is to increase the knowledge of these diseases, to promote the improvement of current diagnostic and therapeutic procedures and to lead to the identification of new nosological elements in rare cardiac diseases.