1. CF Europe, European Respiratory Network
Hilde de Keyser
CF Europe, European Respiratory Network

2. ERN-LUNG Application for European Commission funding (€200,000)
To establish a European Reference Network on rare lung conditions (ERN-LUNG):
To join together medical experts and specialist centres across Europe
To share knowledge and resources for patient-centred research and care of rare and complex lung conditions
With patients at the heart of the network
Awaiting EC decision
EURORDIS coordinating patient input across ERNs

3. CF Core Network: CF Europe + 2 patients
Advisory Board ELF, ERS, policy-makers, foundations, trade organisations, ethics specialists etc.
Advisory Board ELF, ERS, policy-makers, foundations, trade organisations, ethics specialists etc.
Functional Committees To include independent patient representatives –identified via the advisory board application process or another application process.
Patient Assembly
ILD Core Network:
EURO-IPFF + 2 patient s
To incl. IPF, Sarcoidosis, Pulmonary Alveolar Proteinosis, Connective Tissue Diseases, LAM
PCD Core Network:
One patient org rep nominated by the available national orgs + 2 patients
CF Core Network: CF Europe + 2 patients
PH Core Network: PHA Europe + 2 patients
NCFBE Core Network:
ELF Patient Advisory Group
Alpha 1 Core Network:
Alpha Global + 2 patients
Meso Core Network: One patient org rep nominated by the available national orgs + 2 patients
Fillipo Martone
Bernd Quadder
Hilde de Keyser
Bernd Quadder
Luc Matthysen
Gergely Meszaros