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Eurordis - Rare Disease Europe


Lesson 3: From care to research and research to care: ERNs

Expert: Vicky Hedley
University of Newcastle, United Kingdom

Read more about the expert
Vicky Hedley
University of Newcastle, United Kingdom

Victoria is a rare disease policy expert with experience and understanding of a wide range of topics across the rare disease spectrum. As Thematic Coordinator and later Policy Manager for the European Joint Action for Rare Diseases, RD-Action (2015-2018), she is responsible for setting the strategic goals for the Policy & Integration work-stream, and delivering workshops, reports and recommendations across a broad range of topics.

Having previously supported (and led, in the final year)  the project-management of the EUCERD Joint Action (2012-2015), Victoria has contributed to: the development of EUCERD (EU Committee of Experts on Rare Diseases) and CEGRD (Commission Expert Group on Rare Diseases); Recommendations around topics such as Cross-Border Genetic Testing for Rare Diseases; the Incorporation of Rare Diseases into Social Services and Policies; Patient Registration and data collection; National Plans and Strategies; and, most prominently, European Reference Networks (ERNs). Victoria has led the Joint Action support for the conceptualisation and implementation of ERNs for the last two years, and is now overseeing RD-ACTION policy activities designed to assist the Networks in addressing shared challenges via common guidance and tools. Victoria also leads the Newcastle team generating the online resource for the State of the Art of Rare Diseases Activities in Europe and Chairs the RD-ACTION Task-Force on Interoperable data-sharing within the framework of the operation of ERNs, an internal RD & eHealth collaboration.

Learning Objectives

  • For all participants to understand ERNs, i.e. to appreciate what a European Reference Network is
  • Better understand the status quo for ERNs in 2018
  • Better visualise ERN contribution to/responsibilities around research by:
    • Drilling down to some opportunities to add-value
    • Eliciting your views on what ERNs can solve (and perhaps what they cannot)

Video Presentation

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Further Reading


Position paper Rare disease ERN