A non-profit project of building a clinical care network for all rare diseases of the respiratory system, ERN-LUNG has been evaluated by the European Commission and in December 2016, the European Reference Network (ERN) Board of Member States approved ERN-LUNG as one of 24 ERNs for rare diseases. ERNs are virtual cross-border healthcare networks that provide rare disease clinicians with a centralised platform across borders to share knowledge and experiences with the objectives of improving patients’ access
Complex lung diseases require multidisciplinary care along with psycho-social support. This complexity can be due to the underlying genetic mechanism of the disease, the secondary changes and damage done to other organ systems. Early diagnosis and access to specialist care can improve outcomes for many of these conditions. ERN-LUNG addresses a number of rare and complex pulmonary conditions, including idiopathic pulmonary fibrosis, sarcoidosis, cystic fibrosis, non-cystic fibrosis bronchiectasis, pulmonary
ERN-LUNG is currently made up of 79 healthcare providers in 18 countries (+Norway) and is organised into nine Core Networks, representing the diversity of diseases and conditions affecting the respiratory system .
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