• WP7. National reference networks (NRN) and undiagnosed disease programmes or equivalent strategies interlinked with ERN

WP7. National reference networks (NRN) and undiagnosed disease programmes or equivalent strategies interlinked with ERN

  • Leader: University Hospital Tübingen (UKT), Tübingen – Germany, Medical University of Vienna (MUW)

Responsible for proposing recommendations and models for creating or improving national networks and other mechanisms to improve coordination at the national level, interface with ERNs and develop specific programs for undiagnosed conditions.

National reference networks (NRN) and undiagnosed disease programmes or equivalent strategies interlinked with ERN

Objectives

  1. To support capacity building in MS for the development of NRN or equivalent strategies for rare and complex diseases and their integration with ERN.
  2. To develop structures and procedures for undiagnosed patients closely linked to ERN on a national and European level.

Other WPs

  • WP5 National governance and quality assurance models

    National governance and quality assurance models

    • Rizzoli Orthopaedic Institute (IOR), Bologna – Italy, Medical University of Vienna (MUW), University Hospital of Pisa (AOUP)
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  • WP6 National care pathways and ERN referral systems

    National care pathways and ERN referral systems

    • Vilnius University Hospital Santaros Klinikos (VULSK), Vilnius – Lithuania, Health Service Executive (HSE) - Ireland, Medical University of Vienna (MUW)
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  • WP8 Data management

    Data management

    • Ministry of Health and Prevention (DGOS), France, Medical University of Leiden (LUMC), Netherlands
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  • WP9 National support options for ERN-HCP

    National support options for ERN-HCP

    • General University Hospital in Prague (GUH), Czech Republic
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