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European Reference Networks (ERNs) are being established in the EU to provide an opportunity for clinicians to work together in Europe in order to tackle the challenge of rare diseases. ERNs will support clinicians and researchers to share expertise, knowledge and resources across the EU, and ensure doctors have the most recent and expert knowledge possible to ensure excellent treatment and care.

The European Commission launched the first call for interest from networks wanting to become ERNs in March 2016. 24 applications have been received with 370 hospitals and almost 1,000 highly specialised units involved. Successful ERN applications will be announced in early 2017.

ERNs have therefore been organised according to disease groupings and a European Patient Advocacy Group (ePAG) has been developed for each. ePAGs will bring together elected patient representatives and affiliated organisations to ensure that the patient voice is heard throughout the ERN development process. The rare lung condition ERN is called ERN-LUNG and will cover the full range of rare lung conditions.

If you are interested in joining the ePAG, especially if you are a European umbrella organisation for a rare lung condition, and would like more information please contact EURORDIS or ELF