ERN-Lung: a patient-focused network
09:00-11:00 CEST
This session will explore how patients can benefit from ERN-Lung, a European network of specialist healthcare centres and patient organisations working together to improve care, research and support for people living with rare lung conditions. Patients are involved throughout the network’s work, helping to shape research, clinical guidelines, registries and support services.
Discussions will cover genomic diagnostics and counselling, patient registries, patient-reported outcomes and the role of patient organisations in research and clinical guidelines. The session will include perspectives from Liam Galvin, Chair of the ELF Patient Advisory Committee, and Hal Skaara, member of the ELF Pulmonary Hypertension Patient Advisory Group.