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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.

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.

In practice

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69677 Bron Cedex - FRANCE - Tél : 04 27 85 62 57