The mission of ERN GUARD-HEART (also referred to as the Network) 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 (EU). ERN GUARD-HEART brings together a geographically diverse group of 44 expert healthcare providers from 16 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.

Principles – By pooling knowledge and expertise, the 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 EU.
  • To promote innovation and translational research in the area of rare and complex diseases.

Goals – Seven overarching goals have been defined in the ERN GUARD-HEART multiannual programme for accomplishment within five years after its initiation in March 2017, all pertinent to rare cardiac disease:

  1. To set up, consolidate and extend the Network.
  2. To concentrate knowledge and expertise to improve clinical practice using best available evidence.
  3. To improve quality and safety of healthcare services.
  4. To guarantee accessibility to healthcare.
  5. To promote research and innovation both in diagnosis and treatment.
  6. To put the patient and their family in the centre of healthcare services.
  7. To foster transparency in the delivery of healthcare through a global strategy communication.

Thematic (Expertise) Areas To ensure a feasible and smooth deployment of the Network, its initial scope will cover 3 Thematic Areas:

  • Thematic area 1: Familial electrical diseases in adults and children.
  • Thematic area 2: Familial cardiomyopathies in adults and children.
  • Thematic area 3: Special electrophysiology conditions in children. 
  • Thematic area 4: Congenital heart diseases in adults and children.
  • Thematic area 5: Other rare cardiac diseases.