ERN EuroBloodNet

The European Reference Network in Rare Hematological Diseases was officially approved and started its activities last March 2017. Coordinated by Prof. Fenaux (Paris) and co-coordinated by Prof. Gulbis (Brussels), EuroBloodNet brings together 66 highly specialized Centers of Expertise in 15 Member States with expertise on oncological and non-oncological diseases.
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Find here the ENERCA legal analysis and recommendations for Centers of Expertise

News

  • New video on European Reference Networks: a ray of hope for patients with rare and complex diseases, their families and doctors

    June 29, 2017

    In 2017 over 900 highly-specialised medical teams from all over Europe joined their forces in the European Reference Networks (ERNs). Watch the new video produced by the European Commission where doctors and patients explain how the ERNs can tackle complex or rare diseases!

  • The guideline document "Standard procedure and guide for the coding with Orphacodes" has been produced by RD-Action

    June 16, 2017

    Guideline contains 6 recommendations adapted to different and well defined coding situations, i.e. for healthcare planning, for documenting the activity of expert centres, for statistical purposes, for research, for data exchange at the international level. This document is a major step towards the practical implementation of RD codification, necessary for interoperability between countries but also between different sources of data, coming both from care and research. Hopefully Member States, and countries beyond Europe can find here appropriate answers to questions posed by the challenge of RD coding, and find inspiration for real-life implementation.

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