In this webinar, Jessie Dubief will introduce the new Rare Barometer survey on Newborn screening. What type of questions will be asked, and how will the data be analysed? These are some of the questions that will be answered during the webinar. We will also look at the different resources available for you to increase the participation in your country or disease area, and how you can use the results in your own advocacy efforts.
About ERN LUNG
Expertise
patients
clinicians
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 yearโs 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.