WELCOME TO ERN-LUNG
ERN-LUNG is a patient-centric network of European healthcare providers and patient organisations, committed Europe-wide and globally to reducing morbidity and mortality from rare lung diseases in people of all ages through patient care, advocacy, education, research and knowledge-sharing.
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 to diagnosis, care and treatment, establishing common rare disease databases, developing clinical guidelines, thereby facilitating the mobility of expertise rather than patients themselves.
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 hypertension, primary ciliary dyskinesia, alpha-1 antitrypsin deficiency, mesothelioma, chronic lung allograft dysfunction, and other rare lung diseases. ERN-LUNG provides patients with access to the interdisciplinary member teams, providing online second opinions on complex cases without requiring patients to travel.
ERN-LUNG is currently made up of 79 healthcare providers in 25 countries (+Norway) and is organised into ten Core Networks, representing the diversity of diseases and conditions affecting the respiratory system.
In addition to these disease sub-groups, ERN-LUNG is also organised into Functional Committees whose aims are to tackle overarching transversal topics affecting all of the current and future Core Networks. These include research and clinical trials, ethical issues, registries and biobanks, patient-reported outcomes and quality of life, quality management, clinical guidelines and best practice of care, communication and outreach, cross-border care, and training and continued medical education.
The website of the European Commission contains information on how ERNs work, the legislation and coordination of ERNs, updates on the various networks, projects and dates of events.
“JARDIN” is a joint action to integrate European Reference Networks (ERNs) into national health systems. It is a three-year European project, co-funded by the European Union and Member States under the EU4Health program, which aims to increase the impact of ERNs and improve integration into health systems. This includes improving national governance of ERN-HCPs, quality assurance models, patient pathways and ERN referral systems and supporting the formation of national reference networks and undiagnosed disease programs, data management, and national support options for healthcare providers participating in an ERN.
