European Reference Networks for people with rare or complicated diseases

23 Jul 2017 | Genoveva Geppaart

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Every day about 5000 to 8000 rare or complicated diseases affect the lives of around 30 million people within the EU. It can take years before they have a clear diagnosis. The EU and national governments want to improve recognition and treatment of these diseases. As a result, European Reference Networks (ERN) have been established.

What is an ERN doing?

In spring 2017, 24 thematic ERN’s were started. Together they comprise 900 highly specialised healthcare units in 313 hospitals in 25 member states plus Norway.  They work on a range of thematic issues. The doctors who encounter rare or complicated diseases have access to a virtual network of specialised colleagues in Europe. Through ERN’s, rare and complicated diseases can more frequently be diagnosed at an early stage and therefore be treated more effectively.

European strategy

The ERN’s are part of a European Commission (EC) strategy to make the national and European health systems more efficient, accessible and resilient. The EC supports member states by pooling knowledge, expertise, registries, data and funding.

Hopefully ERN’s will help to diagnose rare and complicated diseases at an early stage and ensure that patients can benefit from the best expertise available in Europe.


More information on ERN’s is available on




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