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Affiliated Partners

Affiliated Partners

European Reference networks (ERNs) major aim is to remove existing barriers to access best quality health care for rare diseases patients accross all Europe. Currently, ERNs systems do not cover the whole EU and EEA area and therefore devoted efforts have been focussed on the integration of Affiliated Partners (APs).  APs are not members of the Networks but are designed to establish links with ERNs to contribute to the Networks' activities and benefit from their expertise, facilitating the sharing of knowledge across the EU.

Most importantly, APs should act as entry points to ERNs for patients, improving the accessibility for patients across the EU. For that reason, the APs shall participate in the Clinical Patient Management System (CPMS) virtual consultation panels for those patients that they have referred to the Networks and may also attend some other virtual panels for their own learning purposes or to fill any knowledge gap, due to their specific expertise (e.g. in case of laboratories). 

The addition of the APs will therefore increase the accessibility of the ERNs to patients in a more equitable way. Identification and selection of APs falls under the exclusive competence of the Member States taking into account their individual situation and planning.

The process of designation ended when the new call for full members opened on 30 September 2019. There are two types of APs that the Member States have designated:

  • Associated National Centres (ANCs) for those ERNs where an EU Member State is not yet represented by a full member in the respective ERN. It establishes a link with one specific ERN.
  • A National Coordination Hub (HUBs) establishes at once a link with more than one Network in which a given Member State is neither represented by a full member nor by an Associated National Centre. National Coordination Hubs may especially represent a useful solution for those Member States with very small populations that need to establish such links with many ERNs at once.

For definitions of Affiliated Partners see the Commission Implementing Decision (EU) 2019/1269 of 26 July 2019 amending Implementing Decision 2014/287/EU and the Board Statement of 10 October 2017

ERN-EuroBloodNet Affiliated Partners

ERN-EuroBloodNet has 10 Affiliated Partners; comprised of 7 ANCs and 3 HUBs. The table below shows the Member States from which ERN-EuroBloodNet has received designated APs, the names of the centers, representatives and if the ERN Bilateral Cooperation Agreement has been signed

Associated National Centers

Country Healthcare Provider Representative Bilateral Agreement
Austria Interdisciplinary Amyloidosis Center / Dpt. of Internal Medicine, Medical University of Vienna Hermine Agis Yes
Austria Center for Histiocytic Diseases in Adulthood / Dpt. of Internal Medicine I, Ordensklinikum Linz Elisabethinen Michael Girschikofsky Yes
Denmark Aarhus University Hospital Niels Frost Andersen Yes
Denmark Rigshospitalet / Herlev-Gentofte Hospital Lars Kjeldsen 
Andreas Glenthøj 
Estonia Tartu University Hospital Ain Kaare Yes
Hungary Department of Hematology, Institute of Medicine, Clinical Center of the University of Debrecen Árpád Illés Yes
Slovakia University Hospital Bratislava, Department
of Haematology and Transfusion of Medical Faculty Comenius University and Slovak
Medical University, National Haemophilia Centre
Angelika Bátorová Yes

National Coordination Hubs

Country Healthcare Provider Representative Bilateral Agreement
Luxemburg Centre Hospitalier du Luxembourg Isabelle Kieffer 
Laurent Plawny
Malta Mater Dei Hospital James Clark 
David James Camilleri 
Christian Scerri 
Slovenia Clinical institute for medical genetics, University Medical Center Ljubljana  Luca Lovrecic Yes

Euro Blood Net