About ERN LUNG
Expertise
For patients
Patient registry
ERN-LUNG Academy

The ERN-LUNG Academy is a curriculum for medical staff at any stage of their career, who wishes to get a proof of knowledge on rare respiratory diseases. It consists of Webinars and eCases, but also includes on-site training in ERN-LUNG Centers. We call for applications from participants of EU-member States from September to November each year. Classes start in January. If you wish to apply for next year’s class, please send a letter of motivation to info@ern-lung.eu

ERN-LUNG Online advance system

The EXpert Advisory BOard (EXABO) is a pan-European internet platform, which has been developed in the context of ERN-LUNG in liaison with the Medical Informatics Group of University Hospital Frankfurt, to answer questions on all aspects of rare respiratory diseases. The platform is primarily aimed at patients and care team members but is openly accessible by anyone who wants to ask a related question.

News

Clinical Trial Network for Primary Ciliary Dyskinesia established!

European Reference Networks - Clinical Trials Networks

The clinical trial network for Primary Ciliary Dyskinesia (PCD-CTN) was founded in 2020 under the framework of ERN-LUNG with the aims to improve clinical and translational research and facilitate development of new treatments in the field of PCD. This disease-specific CTN initially consists of 18 clinical trial sites in 12 countries in Europe and the United Kingdom and includes over 1100 adult and over 1100 paediatric individuals with PCD so far. The PCD-CTN is headed by a coordinating centre and will be equipped with a steering and executive committee, a data safety monitoring board as well as committees for protocol review, training and standardization. A strong association with patient organizations and industrial companies will be further cornerstones for this newly established PCD-CTN, with the aim to gain evidence-based treatment and knowledge about management for this orphan disease and bring new personalized treatment approaches to the patients. 

For more information, please contact the Chair Prof. Kim Nielsen (Kim.G.Nielsen@regionh.dk). 

To keep up with regular updates of the ERN-LUNG PCD-CTN, do follow the official Twitter page @PCD_CTN.