Gateway to Uncommon And Rare Diseases of the Heart

ended

The mission of ERN 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. ERN GUARD-Heart started with 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 is on genetically transmitted heart disease and several specific procedures in paediatric patients. By pooling knowledge and expertise, ERN GUARD-Heart network members aim 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. To achieve this purpose, the network members have defined a common strategy oriented by the following principles: • To generate, share and spread knowledge and evidence in the diagnosis and treatment of rare/complex heart diseases within and outside the network. • To implement processes of healthcare delivery focussed on clinical outcomes and patient experience while maximising the cost-effective use of resources. • To develop internal benchmarks and best practices to advance the quality and safety of care processes within and outside the network. • To ensure cross-border accessibility to safe high quality healthcare to patients affected in all countries of the European Union. • To promote innovation and translational research in the area of rare and complex diseases. Healthcare Providers (HCPs) that participate in the Network are reference centres with accredited expertise in the provision of a wide range of services, including prevention (counselling and genetic screening), acute care, outpatient care, diagnostics, interventional therapeutic services, rehabilitation, social care services, palliative care, and family support.