Frequently Asked Questions

Frequently Asked Questions

General

There are 71 Reference Centers over 19 countries.

A complete list of Reference Centers can be found here.

5 years, 1 March 2017 – 1 March 2022

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A call for Reference Centers to join existing ERNs is not expected to be opened before the first quarter of 2019.

Joining an ERN is a several stage-process:

  1. you have to be nationally endorsed for the specific expertise / main thematic group.
  2. you have to check if you fulfil the network specific criteria (available upon request).

If you fulfil both requirements 1. and 2., the Board of Member States will finally decide about your application, also taking into account your specific added value to the existing network and taking into account the advice of the network coordinator.

Please also liaise with the National Coordinator(s) of your specific country to advise you in this process.

For more information and the network criteria email info@endo-ern.eu.

A call for new ERNs should be launched in the incoming years, but it is not expected before 2019.

The procedure to become a patient representative can be found here.

For more information concerning ERNs in general, the application process, and procedures click here.

On Affiliated Partners

There are two types of Affiliated Partners that may be designated at this stage:

  • Associated National Centres
    Associated National Centres will participate in one Network only and, as defined in the 2017 Board Statement, are healthcare providers “with at least some special expertise matching the global thematic domain of a given reference network that concentrates primarily on the provision of healthcare directly related to the activities and services of this specific network, including any type of diagnostic contribution supporting this provision of healthcare. Associated National Centres can therefore comprise any of the following institutions:

    1. clinics and departments/clinical units providing direct outpatient and/or inpatient services to patients;
    2. medical and genetic diagnostic laboratories;
    3. pathological laboratories;
    4. specific facilities for instrument-based diagnostics”.
  • National Coordination Hubs
    National Coordination Hubs establish a link with more than one Network at once and, as defined in the 2017 Board Statement, comprise “any type of institution with the appropriate knowledge and the legal and organizational capacity to link the national healthcare system to a number or all European Reference Networks. National Coordination Hubs function as interfaces between the national healthcare system and those Networks where a given Member State is neither represented by a full member nor by an Associated National Centre. National Coordination Hubs do not need any specific medical expertise or knowledge and their composition might range from:

    1. a major national healthcare provider […];
    2. a network of healthcare providers coordinated at national level;
    3. a non-hospital based, specifically assigned institution as contact and coordination point linking the ERNs with the national system […]” such as the National Contact Points created by the 2011 Cross Border Healthcare Directive.

There are no specific criteria of affiliation to an ERN. It is a competence of Member States to designate their potential affiliated partners.

According to the Board of Member States: ERN applicants will be encouraged to liaise with National authorities, where appropriate, to identify a list of potential affiliated partners, for collaboration with the network from the outset. How-ever, for all potential affiliated partners (those identified before the ERN approval or those that will come up after the ERN approval) the affiliation process will take place only after the approval of the ERN by the Board and following the formal designation of each of the affiliated partners by its national authorities.

Find the complete text here.

Click here for more information from the European Commission.

The Commission has prepared a template for designation, one for each subtype of Affiliated Partner.

The designation letter includes information on the Affiliated Partner and the Network(s) which they wish to establish a link with.

The Commission has also prepared an annex, one for each subtype of Affiliated Partner.

This gives a description of the designated Affiliated Partner, highlighting how the Affiliated Partner complies with the set of minimum recommended criteria identified in the 2017 Board Statement. At the same time, as stated by the Board in that document, “it is important to note that despite the mandatory requirement for some specific expertise within the thematic area covered by the respective network, Associated National Centres are not requested to meet these criteria to the same degree that is expected for full membership.”

As for National Coordination Hubs, the Board noted in the same document that
“With the broad range of non-specialized institutions eligible as National Coordination Hub, the minimum recommended criteria applicable to all are confined to general aspects only.” In this context, various Member States asked the Commission to publish the Network specific criteria to be complied with by the healthcare providers wishing to join a Network as members, established by each Network in their application to the 2016 Call.

You can view the network specific criteria here.

The Member States remain free to use or not such templates.

Affiliated Partners are not members of the Networks. They are expected to establish a link to the Networks for those countries which do not have a member in a specific ERN thus addressing the concerns related to the geographic coverage of the Networks.

Our understanding is that, while not having the level of expertise that would make them qualify for membership, the Affiliated Partners will contribute to the Networks’ activities and benefit from their expertise, facilitating the sharing of knowledge across the EU. Most importantly, Affiliated Partners should act as entry points to ERNs for patients, improving the accessibility for patients across the EU. For that reason, the Affiliated Partners shall participate in the 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).

In some cases, Affiliated Partners may at a later stage, if they are healthcare providers and develop the required expertise, become ERN members. This would only happen in compliance with the procedures for membership applicable to any healthcare provider and NOT automatically or with a special procedure.

Please note moreover that an Affiliated Partner will lose its partnership i.a. if a healthcare provider from the same Member State joins the Network as a member.

The designation letter will be sent by the Member States to the Commission’s functional mailbox: SANTE-ERN-AFFILIATED-PARTNERS@ec.europa.eu and to the Coordinator of the Network that this Affiliated Partner shall join.

The deadline for the designation (initially set for December 2018) was extended until the launch of the next Call for new Members joining existing Networks.