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

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

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