The plan of actions (2016–2018) of the Cystic Fibrosis-CFTR Network is broken down into four axes made up of the Network’s missions:
Axis 1: Propel/coordinate actions aiming to improve patient management/treatment.
- Action 1 – Ensure the transfer of certain data of the Cystic Fibrosis Registry toward the BNDMR (National Rare Disease Database);
- Action 2 – Coordinate and write the National Protocol for Diagnosis and Care of Cystic Fibrosis (PNDS, Protocole National de Diagnostic et de Soins Mucoviscidose);
- Action 3 – Set up a shared medical decision project;
- Action 4 – Pursue therapy education program;
- Action 5 – Develop projects around the transition from childhood to adulthood.
Axis 2: Develop teaching, education, and information.
- Action 1 – Develop an e-learning program designed for private-practice nurses;
- Action 2 – Organize specialized seminars.
Axis 3: Favor/develop the value of the continuum between fundamental, translational, and clinical research.
- Action 1 – National coordination through the National Clinical Research Platform (Plateforme Nationale de Recherche Clinique, PNRC);
- Action 2 – Organization of Network Days (French-language Days, Scientific Days).
Axis 4: Encourage interactions with Europe and the world (see also the International cooperation section)
- Action 1 - Integration of three centers (Lyon, Paris Cochin, and Paris Necker) into the European Rare Disease Network ERN-LUNG.