Understanding European Reference Networks: Cooperation on rare diseases across Europe

European Reference Networks (ERNs) are newly established virtual platforms for voluntary cross-border collaboration between specialists in rare and complex diseases. ERNs were set up under Directive 2011/24/EU on the application of patients' rights in cross-border healthcare, and go back to a 2009 Council recommendation on an action in the field of rare diseases.

Since specialist knowledge of rare diseases is both scarce and scattered across countries, the EU-level cooperation afforded by ERNs is regarded as bringing added value through maximising synergies. Currently, 24 thematic ERNs involve more than 900 specialised healthcare teams in over 300 hospitals in 25 EU Member States plus Norway.

A public consultation fed into the establishment of the ERNs, and a number of stakeholder views were presented on the occasion of their launch. The ERN initiative has generally been well received. According to stakeholders, its strengths include opportunities for carrying out research and new treatments, breaking the isolation of specialists and patients, reducing inequalities in care, and fostering patient involvement. Among the challenges that need to be addressed, stakeholders mention questions concerning reimbursement, interoperability and data confidentiality, and legal issues.

The ERNs are currently in their deployment phase, and expected to reach full capacity over the next five years.

Author: Nicole Scholz

ESO: Key Source: European Reference Networks (ERNs) http://www.europeansources.info/record/european-reference-networks-erns/

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