Summary report and Video recording of the 4th Conference on European Reference Networks available!

Summary report and Video recording of the 4th Conference on European Reference Networks available!

2018-11-27
Summary report and Video recording of the 4th Conference on European Reference Networks available!

The fourth Conference on European Reference Networks (ERNs) took place 21-22 November in Brussels

Health professionals, researchers, patient organisations and policymakers gathered in Brussels on 21 & 22 November for the 4th European Reference Networks Conference.

The well-attended and lively event featured two full days of presentations and debate, driven by plenary sessions and eight parallel workshops. Delegates took advantage of networking opportunities throughout the conference, which was also streamed live online.

 

 

The conference focused on the need to consolidate the networks and examined some of the challenges that lie ahead. In this context several transversal hot topics for all ERNs were discussed, as the integration of ERNs into national health systems, development of clincial practice guidelines for rare diseases, the role of ERNs in building patient registries for rare diseases, the Clinical Patient Management System or long-term sustainability of the ERNs.

ERN-EuroBloodNet coordinator, Pierre Fenaux, presented during the Plenary session: Round table IV."ERNs' Main challenges for the future", the main challenges to be faced by ERNs in the experience of the network.

 

 

Also, there was a strong message of the added value that European cooperation can provide to vulnerable citizens. Commissioner for Health and Food Safety Vytenis Andriukaitis stated: “Expertise is being shared, developed, and expanded across Europe – increasing the capacity of specialists and health care and cure systems. We have to believe in our success and continue to work in our cooperative spirit.”

 

 

ERN-EuroBloodNet was represented during the Conference by:

  • Pierre Fenaux: ERN-EuroBloodNet Coordinator and Oncological hub coordinator
  • Béatrice Gulbis: ERN-EuroBloodNet Co-coordinator and Non-Oncological hub coordinator
  • María del Mar Mañú Pereira: ERN-EuroBloodNet Scientific Director
  • Victoria Gutiérrez Valle: ERN-EuroBloodNet IT and dissemination manager
  • Mariangela Pellegrini: ERN-EuroBloodNet Manager
  • Fahed Ahssini: ERN-EuroBloodNet Operational Helpdesk
  • Patricia Aguilar-Martinez: Transversal Field of Action on Continuing medical education coordinator for the non oncological diseases
  • Sebastian Wittnebel: Representative of the Transversal Field of Action on Continuing medical education coordinator for the oncological diseases
  • Antonio Piga: Transversal Field of Action on Clinical Trials and Research coordinator for the non-oncological diseases
  • Amanda Bok: ePAG for Haemophilia, Rare bleeding-coagulation disorders and related diseases subnetwork coordinator, and Transversal Field of Action on Best Practices coordinator
  • Pierre Aumont: ePAG for Chronic Lymphocytic and Waldenström disease, and Leukemia and Lymphoid malignancies subnetwork coordinator

 

While a detailed report is in preparation which will capture the key messages from both days of the conference, the summary report with presentations and video material are already available at the EC Website.

 

Euro Blood Net