Structure and Governance

The organizational structure of ERN GUARD-HEART is designed to facilitate planning, organising, leading and controlling the efforts and resources of the Network to achieve its goals. The structure is designed to facilitate the objectives and activities proposed in the multiannual work programme of ERN GUARD-HEART. Key components of the organization are the following:

  • The Network Board is the main scientific, management, legal and financial decision-making body of the Network, which will assess the activities carried out by members and implement contingency plans if required. The Network Board is chaired by the Network coordinator and is composed of Representatives of each Member Centre and two patient representatives.
  • The Patient Advocacy Board is responsible for bringing the voice of patients and their families to the Network Board and support ERN GUARD-HEART activities on patient engagement and external communication.
  • The Steering Committee is an executive body in charge of implementing the decisions of the Network Board and coordinating the healthcare evaluation body, thematic groups and cross-cutting action groups. The Steering Committee is chaired by the Network coordinator and is composed of the thematic area leaders, cross-cutting action group leaders and two patient representatives.
  • The Thematic Groups, led by the thematic area leaders, are responsible for conducting activities of subnetworks focussed on specific groups of rare and complex heart diseases.
  • The Cross-cutting Action Groups conduct specific activities on knowledge management, ethics, research, training and data management that are relevant to all groups of rare and complex heart diseases.
  • The Healthcare Evaluation Body supports the level of quality assurance in the Network.
  • The Project Management Office supports the Network Board and the Steering Committee in administrative tasks and organisation of meetings.