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Home - About VASCERN - Structure and Governance - Governance
About VASCERN
Introduction

Governance

VASCERN’s governance structure is designed to encourage collaboration and ensure high standards of care and research. This structure allows us to efficiently work together to achieve our goals:

1. Coordination Project Team

  • Role: Manages the overall operations of VASCERN, ensuring all projects and activities run smoothly.
  • Members: Includes network coordinator, project managers, project assistants, data steward and IT officer who handle the day-to-day management tasks​.

2. Network Coordinator

  • Role: Provides leadership and oversees the strategic direction of VASCERN. The Network Coordinator is elected every five years and works closely with the Coordination Project Team.

3. Board

  • Role: Provides strategic direction and oversight. The board meets annually to review progress and set future priorities.
  • Members: Composed of 1 designated representative for each Healthcare Providers (HCPs)
    member of the network and ePAG Chair and 6 ePAG co-chairs.

4. Rare Disease Working Groups (RDWGs)

  • Role: Focuses on specific rare vascular diseases. Each group develops clinical guidelines, conducts research, and provides expert advice on patient care.
  • Members: Includes HCP representatives and patient representatives from the ePAG​​Each RDWG has a Chair and a Co-chair.

5. European Patient Advocacy Group (ePAG)

  • Role: Ensures that patient voices are heard in all VASCERN activities. ePAG members participate in decision-making processes and help shape the network’s policies and practices.
  • Members: Composed of patient advocates from various patient organizations​​. The ePAG has a Chair and 6 Co-chairs.

6. Council

  • Role: Serves as the operational decision-making body, monitoring the implementation of the action plan and providing feedback to the Working Groups and Board.
  • Members: Includes the Chairs of the Working Groups, the Coordinator, and the Project Manager. Co-chairs can attend as substitutes if necessary.
  • Procedures: The Council meets virtually at least every two months or more frequently as needed. Decisions are taken by consensus, with the Chair’s vote being predominant in case of equality​​.

7. Transversal Working Groups

  • Role: Address cross-cutting issues such as ethics, patient registry, communication, pregnancy, psychology and education. These groups work on specific projects and report to the Council and Board.
  • Members: Include HCP representatives, team members, and patient representatives​​.

8. Assembly

  • Role: Includes larger teams from healthcare providers (HCPs) and patient representatives. The assembly meets once a year during the board meeting to discuss broader strategic issues and ensure comprehensive representation.
  • Members: Composed of HCP representatives and patient representatives from the ePAG​​.

Evaluation and Continuous Improvement

Every five years, VASCERN undergoes a thorough evaluation by the European Commission. This evaluation assesses the network’s performance in areas such as patient care, research, education, and governance. The process involves both self-evaluation and external audits conducted by independent evaluators. The findings help identify areas for improvement and ensure that VASCERN continues to meet high standards of excellence​​.

Patient Involvement

Patient representatives play a crucial role in our governance. Their insights and experiences help shape VASCERN’s strategies and ensure that our activities are patient-centered. By involving patients in decision-making processes, we aim to create a more inclusive and supportive environment for everyone affected by rare vascular diseases​​.

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