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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News

  • 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.

  • Summer School to empower professionals to design and manage a rare disease registry

    June 6, 2017

    Registries represent essential tools for Rare Diseases to increase timely and accurate diagnosis, improve patients management, tailor treatments, facilitate clinical trials, support healthcare planning and speed up research, reasons for which their implementation have become a common objective to be achieved by the European Reference Network. The "5th International Summer School on Rare Diseases and Orphan Drug Registries", organized by the National Centre for Rare Diseases(ISS) aims to promote the establishment of FAIR RD registries in compliance with IRDiRC and EU Recommendations,

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