ERN-LUNG will be present during the ERS annual congress in Barcelona in September!ย We will have a booth with information material in the World village, and we will also hold a session on September 9thย (9:30-11:30) on the question how exactly patients can benefit from our network.
ERS congress Barcelona, Wednesday Sep 9th 2026, 9:30 – 11:30
Session title: ERN-LUNG : a patient-focussed network
Session duration: 2 hours
Subtitle: How patients can benefit from ERN-LUNG
Aims: Point out the different channels through which patients can have an impact
Chair: Marc Humbert
Introduction: 15 minutes
Talk 1: 30 minutes
What can I expect from genomic diagnostics and counselling?
The importance of the fast-growing field of genomics in the diagnosis of rare pulmonary diseases, using PAH and ILD as examples
David Montani
Raphaรซl Borie
Hannah Scott
Liam Galvin
Talk 2: 15 minutes
Why should I join the ERN-LUNG Registry?
A way to impact the development of new therapies
Olivier Sitbon
Thazhone Stephy
Hall Skaara
Talk 3: 15 minutes
How do I benefit from the use of PROs?
We will discuss the role PROs have in improving patient care
Kathryn Machray
Roma Armstrong
Talk 4 : 15 minutes
What is the role of patient associations in guidelines and clinical trial networks?
Marion Delcroix
Gergely Meszaros
Q&A : 30 minutes
