Assemblée générale ERN-Lung
ERN-Lung est un réseau à à l'échelle européenne et mondiale centré sur le patient visant à réduire la morbidité et la mortalité dues à des maladies pulmonaires rares chez les personnes de tous âges
Assemblée générale des membres du réseau européen ERN-LUNG, qui regroupe une centaine d’hôpitaux européens actifs dans le domaine des maladies respiratoires rares
Programme 23/03:
10:00 – 10:45-Plenary Meeting :
ERN-LUNG report (Network Coordination Team)
10:45 – 13:00-Plenary Meeting :
• Activities of the Functional Committees:
Short report (10 min) followed by discussion (5 min) by FC leaders/ representatives:
1. Registries and Biobanks - (15’) - Olivier Sitbon
2. Patient Recorded Outcomes & Quality of Life- Simon Gibbs, Horst Olschewski, and Patient representative (30’)
3. Ethics Committee- (5`) – Thomas Wagner
Short break (15’)
4. Research and Clinical Trials (15’) -
5. Guidelines and Best Practice of Care (15’) -
6. Communication and Outreach – Pippa Powell/Gergely Meszaros (15’)
• Medical Steering Committee Meeting (15’)
• Photo (10`)
13:00 – 14:00 : Lunch
14:00 – 15:45-Plenary Meeting
• Activities of the Functional Committees (continued)
7. CPMS 2.0/Cross-Border Care (15`) – Helge Hebestreit/Sabina Solinas – Joanna Chorotowska/Adam Torbicki
8. Patient Journeys - (15`) – Nora Lazaro (EURORDIS)
9. Prof. training & cont. med. Education – Thomas Koudstaal/Elisabeth Humbert (15’)
10. Quality Management – (15`) – Donata Eick (10`)/Marion Delcroix (5`)
11. Undiagnosed Patient Working Group – (15’) – Janine Marx/Gergely Meszaros
12. Genomics WG – (30`) – Kathryn Machray/Hannah Scott/David Montani/Raphael Borie
15:45 – 16:00 Coffee Break
16:00 – 17:30-Plenary Meeting
13. ePAG Presentations (60`)
14. Breathing from another perspective - Thomas Similowski (Sorbonne University) (30’)
17:45 – 19:00 -Core Network – BE, SARC, CF, AATD, LAM WG meeting
Programme 24/03:
08:30 – 11:00-Parallel Group Meetings
• Core Network specific meetings (*) (content organized by the CN leaders/their representatives)
08:30 – 09:45 - ORLD, PH
09:45 – 11:00 – ILD, PCD, MSTO
11:15 – 13:00-Plenary Meeting
Short break (15’)
• Discussion on new projects
• Core Network reports from group meetings
Open Discussion
13:00 – 14:00-Lunch
