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ERN Coordinators and Board of Members States News

ERN Coordinators and Board of Members States News
News

“The ERN Coordinators are getting ready for the challenges of enlarging the European Reference Networks”

The ERN coordinators met in Brussels on the 25th March 2019 and addressed several key aspects of the networks’ development. The main discussions focused on the on-going designation by the Member States of Affiliated partners, both from a procedural point of view and concerning the practical implication for the ERNs. Several topics were then addressed which are related to the growing operational activities and development of the networks: the use of the IT platforms (CPMS and ECP), the communication activities, the relations with industry, the monitoring, the research activities, education and training, and the support from different financial instruments.

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“The ERN Board of Member States decided to pursue the consolidation of the ERNs in its meeting held in Brussels on 26th March 2019”

A Statement of the Board of Member States will be prepared concerning the integration of the ERNs into the national healthcare systems, decided the representatives of Member States. They also discussed relevant aspects related to the strengthening and enlargement of the European Reference Networks and the relationship with industry. The Swedish board member was elected new co-chair for the upcoming two years.

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Last News & Events

  • EJP RD workshop – The Blood-Brain Barrier: current research and novel therapeutic crossing approaches
  • Patient representatives for Smith-Lemli-Opitz syndrome are looking for European families
  • Rare disease education in Europe – read the new publication
  • Rare Diseases events under the Czech EU Council Presidency
  • MetabERN Board meeting in Prague, 13-15 October 2022
  • EJP Research Mobility Fellowship is now open
  • First Italian National Meeting on Rare Inherited Metabolic Diseases in Adults
  • IRDiRC Diagnostic Scientific Committee Nomination Call

Activities

  • Publications and Guidelines
  • Unified Registry for Inherited Metabolic Disorders
  • Projects

Disclaimer

MetabERN is a European Reference Network (ERN) approved by the ERN Board of Member States.
The ERNs are co-funded by the European Commission.
For more information about the ERNs and the EU health strategy, please visit ec.europa.eu/health/ern
The content on this website represents the views of the network and is its sole responsibility; it can in no way be taken to reflect the views of the European Commission or any other body of the European Union.

For more information please contact
Prof. Maurizio Scarpa, MD, PhD
MetabERN Coordinator

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