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Responding to the very strong and politically motivated push of the European Commission to establish European healthcare structures for broader groups of rare diseases (see here) a group of clinicians, geneticists, researchers, patients and patient representatives have set out to form an initiative for a European Reference Network (ERN) for Rare Neurological Diseases. This initiative will be preparing a bid that will be submitted to the Commission with respect to a public call that will likely be launched in March 2016.

What are the aims of European Reference Networks?

The intention of European Reference Networks (ERNs) is to facilitate improvements in access to diagnosis, treatment and provision of high-quality, accessible and cost-effective healthcare for patients who have a medical condition requiring a particular concentration of expertise or resources. They are therefore particularly intended to cover medical domains where expertise is rare. European Reference Networks will also be focal points for medical training and research, information dissemination and evaluation.

What is the background?

As part of the agreed EU Directive on patients' rights in cross-border healthcare, the European Commission is required to support Member States in the development of European Reference Networks between healthcare providers and Centres of Expertise.

The Commission has published a list of criteria that the networks must fulfil and the conditions and criteria which providers wishing to join networks must also fulfil. Further to this, it has suggested principles of governance for the ERNs and an outline process for their establishment.  The Networks are expected to be operational by 2016.

Objectives of European Reference Networks

As stated in the EU Directive, European Reference Networks should:

  • have knowledge and expertise to diagnose, follow-up and manage patients with evidence of good practice;
  • follow a multi-disciplinary approach;
  • offer a high level of expertise and have the capacity to produce good practice guidelines and to implement outcome measures and quality control;
  • make a contribution to research;
  • organise teaching and training activities;
  • collaborate closely with other centres of expertise and networks at national and international level

Under the Commission Implementing Decision an ERN has to fulfil these requirements:

  • Have at least 10 healthcare providers (members of a network), from at least 8 different Member-States;
  • Each healthcare provider (member of a network) must be endorsed by the respective Member State;
  • All Members of a Network must have in common the expertise in a certain field, or in a certain treatment(s) offered or in a diseases or health conditions;
  • Submit a proposal for a Network (once the call for ERN is launched);
  • The network proposal will be technically assessed, by an independent assessment body according to an Assessment Manual, to ensure that it fulfils all the criteria for Networks and its Members as provided in the Commission Delegated Decision (354 KB);
  • The Board of Member States based in the technical assessment will decide the approval of the Networks and membership proposals; 
  • Healthcare providers willing to join an established network will have the opportunity to apply in order to become a Member;
  • All the Networks and their Members will be evaluated, at the latest every five years.

Status of ERN-RND

Our initiative aims to form a European Reference Network on Rare Neurological Diseases (ERN-RND). During the formation phase and in order to be able to build a working infrastructure we will focus on rare movement disorders and rare cognitive diseases. The nature of ERN-RND will be inclusive as we are open to new centers and aim to expand later to further rare neurological disorders in order to “provide a home” to every patient with a rare neurological disease.

Contact personHolm Graessner