ERN-LUNG is a Network of European Healthcare Providers (HCPs) dedicated to ensuring and promoting excellence in care and research for the benefit of patients affected by rare respiratory diseases. Our vision is to be a European knowledge hub for rare respiratory diseases with the aim of decreasing morbidity and mortality from such diseases in people of all ages. It is a non-profit, international, professional, patient-centric and scientific network that is committed Europe-wide and globally to the prevention, diagnosis and treatment of rare respiratory diseases through patient care and advocacy, education and research. In keeping with these goals, ERN-LUNG interacts with both national and international organisations which have similar goals.
The Network’s current set up has evolved since its creation in 2017 and will continue to do so with better and more inclusive geographical coverage. In particular, ERN-LUNG looks forward to working closely with Member States where currently no member HCPs are present, in order to involve them as Affiliated Partners and to ensure that collaboration, information exchange, multidisciplinary research initiatives and any other activities undertaken within ERN-LUNG encompasses centres beyond its established full membership.
In order to make this vision a reality, the 5-year plan of ERN-LUNG is aimed at fulfilling the following objectives:
1. Taking stock of existing expertise at European level in the area of rare respiratory diseases to assess gaps and identify solutions.
2. Improving cross-border collaborations for improved continuity of care and providing highly specialized patient-centred care in rare respiratory diseases.
3. Advancing innovation in medical science by reinforcing research, epidemiological surveillance like registries, clinical trials, and providing training for healthcare professionals.
4. Ensuring easy access to quality and accurate information on rare respiratory diseases by developing online and offline resources about diseases covered within ERN-LUNG.
5. Strengthening the skills, competencies and abilities of key ERN-LUNG target groups via annual training programs and continued educational activities targeted at HCPs and patients.