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The countdown for the creation of European Reference Networks for Rare Diseases has started!

June 2012

Last week in Luxembourg, the EU Committee of Member States responsible for the implementation of the Directive on Patients’ Rights in Cross Border Health Care met to discuss the strategy on European Reference Networks (ERN) while the EU Committee of Experts on Rare Diseases (EUCERD) 5th Meeting discussed its Draft Recommendation on ERNs for Rare Diseases.

EURORDIS is actively feeding this reflection process and has recently adopted a Position Paper to outline its vision and strategy for ERNs for Rare Diseases, what they should comprise and how they should function based on the patient’s real life experience.  This three-page document is the condensed result of a long and broad consultation process started six years ago with EURORDIS members as well as with other stakeholders.

EURORDIS’ Position

In a nutshell, EURORDIS is advocating that a) in the long run, all rare disease patients should be covered by at least one ERN;  b) a  limited number of ERNs for RDs (20 to 30) should be created to cover therapeutic areas rather than by distinct disease so to ensure a full coverage of all RDs; c) a high-level of multi-disciplinarily, flexibility and inter-operability among ERNs is absolutely necessary; d) successful development of ERNs will rely on a step-wise approach aimed at establishing progressively the various activities of the ERN such as expert opinion, good practice guidelines on medical and social care and patient registries.

Why are these ERNs important for patients with rare diseases?
Due to the rarity of the disease, the expertise is by essence scarce and scattered in different European countries.  The best way to speed up the access to a proper diagnosis, in a timely manner, as well as appropriate care, is to share expertise by linking at European level  national centres of expertise, healthcare providers, diagnostic laboratories and patients’ organisations, etc.

ERNs are also intended to gather a critical mass of patients and data to support rare disease registries and clinical research.

The EUCERD is expected to adopt its Recommendations for ERNs in November 2012.

Actual creation of ERNs for Rare Diseases is foreseen from 2014 onwards.

Read EURORDIS Position Paper on European Reference Networks