News

The ENERCA White Book to be presented in Brussels in an event organized by EURORDIS

It will be presented at the 6th European Conference on Rare Diseases and Orphan Products, organized by EURORDIS next May 23rd 25th in Brussels (Belgium)

April 16th 2012

ECRD 2012

The most important ENERCA deliverable is the White Book for the creation of a European Research Network (ERN) for Rare Anaemias (RA). It will be presented at the 6th European Conference on Rare Diseases and Orphan Products, organized by EURORDIS next May 23rd 25th in Brussels (Belgium). This pivotal task of ENERCA Project is intended to be a milestone in the process of reducing patient’s health inequalities across Europe and a friendly user tool for other rare diseases ERNs.

Professor Béatrice Gulbis, is the head of the Clinical Chemistry Department at the Hôpital Erasme (Belgium) and will be responsible for the paper presentation. Prof. Gulbis, leader of the Work Package (WP) on haemoglobinopathies, has contributed to the definition of specific professional requirements necessary to identify Centres of Expertise (Expert Centres) in RAs. The White Book reflects the wide joint effort made by five ENERCA WPs in order to obtain the necessary consensus criteria for the definition of RAs expertise in Europe, their recognition by Member States (MS) health authorities and the final ERN establishment.  This can be summarized into four main steps:

  1. Establishment of an Expert Board
  2. Analysis of the current situation of RAs in Europe by stakeholders  interview  (questionnaires)
  3. Collection of stakeholders feedback and reports preparation 
  4. Reports discussion and final consensus adoption

Final consensus document (White Book) will be submitted to MS Health Authorities for consideration and approval.

Copyright © 2002 - 2017 Enerca

Co-funded by the Health Programme of the European Union.