Target Groups

Target groups of ERN GUARD-HEART are all players that have a major role in the healthcare value chain, including:

• The patients and their families that are expected to benefit from increased accessibility, quality and safety of healthcare related to rare and complex heart diseases.
• The healthcare providers that are expected to benefit from the pooling of knowledge, accessible expertise, improved clinical guidelines, better clinical outcomes and efficient use of resources.
• The public health care systems and private health insurance companies potentially benefiting from the implementation of more efficient and affordable healthcare procedures. ERN GUARD-HEART will help Member States with an insufficient number of patients with a rare cardiac disease or lacking technology or expertise to provide highly specialised services of high quality. Furthermore, the future implementation of quality and safety benchmarks will benefit public health care systems and private health insurance companies to compare and spread best practices.
• European academia entities engaged in cardiac research- and healthcare-related activities such as the Association for European Paediatric Cardiology (AEPC), European Society of Cardiology (ESC) and the European Heart Rhythm Association (EHRA), as well as undergraduate and postgraduate students and researchers. Universities and university hospitals will also benefit from all data present within ERN GUARD-HEART and maintained by the ‘Knowledge Management’ cross-cutting action group.
• The pharmaceutical and medical device companies that can benefit from research outcomes susceptible of commercial exploitation. Thereby, pharmaceutical and medical device companies intended to treat or prevent rare cardiac diseases will benefit strongly from the pooling of knowledge in ERN GUARD-HEART. Common issues encountered by these companies in rare disease drug development are mainly due to little and fragmented medical expertise and a poor research infrastructure for conducting more efficient drug development programmes.
• Other ERNs (e.g., ERN EURO-NMD for neuromuscular diseases, ERN EURACAN for adult cancers, ERN TRANSPLANT-CHILD for transplantation in children, and MetabERN for hereditary metabolic disorders ) that deal with rare and complex diseases linked with rare cardiac conditions (e.g. rare cardiac tumours, cardiac transplantation, Fabry disease).