EN 
Dear patient representatives,
ERN-LUNG now has a new Genetics Working Group, to ensure rare lung diseases with a potential genetic component/diagnosis are not neglected within our network, and we are keen for patient representatives to join this new group!
Co-lead by David Montani and Raphael Borie from AP-HP in Paris, the Genetics WG aims to
- Identify expertise and needs within the ERN-LUNG network with regard to genetics/genetic diagnosis
- Provide aspace for exchange, from training to sharing best practices and discussing patient cases
- Develop projects that support our members
Currently, the aims of the group are still very broad, as we want these to be shaped by the needs of our network, from the HCP as well as the patient perspective. As a first task, the WG will develop a survey to understand the expertise and knowledge on the topic within the network, as this will form the basis for any future projects.
The WG will meet regularly online, around every 2 months.During the ABM 2026 (23rd +24th March 2026 in Paris) there will bea presentationof the WG and you can also ask your questions there.
All interested patient representatives are welcome to join the Genetics WG. Please let us know if you are interested, so we can add you to our mailing list! And don’t hesitate to contact us if you have any questions.
Best wishes,
Kathryn & Hannah
(project managers for the Genetics WG)
Mail: H.Scott@med.uni-frankfurt.de
Website: https://ern-lung.eu/