Supporting patient representatives at the ERN-LUNG general meeting

From 7–8 March, 2018, we took part in the ERN-LUNG general meeting in Frankfurt, Germany.

ERN-LUNG aims to be the central hub for rare lung conditions, and the means through which the EU will fund and drive work in this area in the coming years. ELF’s role is to support patient involvement within the network.

The aim of the meeting was for all core disease and functional committee leads to update the whole network on progress in year 1 and to plan for Year 2. The network members were in attendance, as well as Rare Diseases Europe (EURORDIS), the European Respiratory Society and 11 enthusiastic patient representatives covering a range of rare lung conditions, including bronchiectasis, idiopathic pulmonary fibrosis, pulmonary hypertension, mesothelioma, sarcoidosis and primary ciliary dyskinesia.

Developments in year one include an online system for experts to consultant with each other on difficult cases, setting up an infrastructure for patients to be able to submit questions to experts and funding for a registry warehouse for bronchiectasis, cystic fibrosis and pulmonary hypertension. Over the next year, the aims are to further strengthen the network and its collaborations, and to work on the priorities of research, registries, training and cross-border care.

Visit the ERN-LUNG website.

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