Governance

ERN-EuroBloodNet is officially coordinated by AP-HP. Since its beginning 2017, the expanded Coordination team included three main medical/scientist hubs of coordination to ensure the deployment of the ERN strategic plan and the achievement of its results:

• Assistance Publique - Hopitaux de Paris (AP-HP)
  • Prof Pierre Fenaux, ERN Coordinator, Chair of the oncological hub
• Université libre de Bruxelles (ULB/ERASME)
  • Prof Béatrice Gulbis, ERN co-Coordinator, Chair of the non-oncological hub
• Vall d'Hebron University Hospital - Vall d'Hebron Research Institute (HUVH/VHIR)
  • Dr María del Mar Mañú-Pereira, ERN Scientific Director and Coordinator of ENROL registry

Staff members conforming ERN-EuroBloodNet Coordination team are assigned to the different coordination hubs based on their main role and activities. The Coordination team is in charge of assuring the proper operational management of the network and the smooth functioning among the key players.

Board of the Network

The Board of the Network (BoN) is composed by all Members and Affiliated Partners representatives, and the ERN European Patients Advocacy Groups (ePAGs).

The BoN, as the decision-making body of the ERN, is responsible for:

• Election / Renewal of chairs of the coordinators of the 6 subnetworks and the 5 transversal fields of action
• Approval / renewal / withdrawal of ERN-EuroBloodNet members and the ePAGs, in collaboration with Eurordis.
• Revision and approval of the multi-annual work plan developed by the SSB

All member representatives, as part of the BoN, have the obligation to:

• Attend BoN meetings
• Follow the rules of procedure established by the Board
• Pursue the Network's goals, objectives, and procedures
• Adhere to the Network's criteria for experts
• Provide the relevant data and information to support monitoring and periodic evaluation.

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Scientific and Strategic Board

The Scientific and Strategic Board (SSB) is composed by:

• ERN Coordination
• TFAs Coordinators
• Subnetworks Coordinators
• From 2021, leaders of ongoing actions

The main function of the SSB is to develop the MWP and oversee ERN-EuroBloodNet actions and assess their impact.

• Defines the MWP
• Ensures the achievement of ERN-EuroBloodNet objectives
• Ensure a good balance in patient and clinical needs of ERN projects
• Assess the level of impact of outcomes
• Identify problems impacting the proper development of the MWP and inform the ERN Coordination to implement correcting measures
• Coordinates and promotes ERN actions with the support of ERN coordination
• Exploit and disseminate the outcomes in close collaboration of the ERN coordination

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ERN-EuroBloodNet Stakeholders Group

The three governing bodies are assisted by the ERN-EuroBloodNet Stakeholders Group (SG):

• Supporting Partners (clinical or research)
• EURORDIS
• European Hematology Association (EHA)
• Orphanet
• Other ERNs and Networks consortiums (e.g. European Joint Programme on Rare Diseases (EJP-RD), European RD research coordination and support action (ERICA))

The roles of the SG are:

• Supports the ERN-EuroBloodNet governing bodies as Advisory Group on:
  • Needs, opportunities for synergies and potential overlappings on the actions gathered in the MWP
  • Concrete issues impacting the development of some action, e.g. scientific and research aspects, codifications for interoperability.
• Contributes to increasing the outreach of the ERN-EuroBloodNet actions and outcomes among the medical and scientific community, patients' community and the public in general.