First Meeting of the ERN Coordinators Group

The first meeting of the Coordinators of the 24 ERNs with representatives from the European Commission and the Board of Member States (representatives from across the EU Member States) was held in Brussels, Belgium, on 26 April 2017. One of the major topics of this meeting was the working methods of the ERN Coordinators Group and to reach an agreement on the chairing of the future Coordinators meetings and to outline the working procedures of the ERN Coordinators Group. During this meeting, the Coordinators agreed to organize 7 Working Groups based on important topics for future discussions with the European Commission and the Board of Member States:

  • IT and data sharing
  • Research
  • Monitoring and assessment system of ERNs
  • Conflict of interest and legal healthcare
  • Capacity building, education, and guidelines
  • Cross-border healthcare
  • Business continuity

The ERN Coordinators agreed to select a Chair (Spokesman) from each of the Working Groups for future discussions with the European Commission and the Board of Member States. On behalf of ERN GUARD-HEART, the Coordinator, Dr. Arthur Wilde, will participate in the Working Groups on Research and Brexit. The ERN Coordinators Working Group on Research will participate in the three Action Groups of the Horizon 2020 Joint Programme on transnational research on rare diseases (Action 1: research), virtual platform (Action 2: data and information), and data management (Action 3: capacity building). The ERN Coordinators Working Group on Business continuity will initially focus on the need of future discussions with the European Commission about the importance of Healthcare Providers (HCPs) from UK to remain in the ERNs after the completion of Brexit.

Other important topics of this first meeting of ERN Coordinators involved future calls, eHealth tools, cooperation and interaction of ERN with the ERN Board of Member States, and patient informed consent for ERNs (see for for more information the March 2017 Newsletter of ERN GUARD-HEART).

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