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  1. Propel/coordinate actions aiming to improve patient management/treatment.
  • Favor the coordination of multidisciplinary expertise within the network;
  • Favor the writing and use of good practice guidelines and protocols within the network;
  • Favor the coordination of healthcare with the medical-social sector and the social or educational sectors when needed;
  • Favor the creation and incrementation of registries, data collection, and feed the National Rare Disease Database (Banque Nationale de Données Maladies Rares, BNDMR);
  • Anticipate demographic changes and new needs in terms of healthcare organization.
  1. Develop teaching, education, and information.
  • Make the network visible to patients and healthcare professionals;
  • Undertake educational actions within the network;
  • Reinforce the links and reciprocal information with the network’s associations.
  1. Favor/develop the value of the continuum between fundamental, translational, and clinical research.
  • Reinforce the links between the different research actors; 
  • Coordinate research actions;
  • Encourage and support research.
  1. Encourage interactions with Europe and the world.
  • Reinforce the links with European actions and programs (registries, research, etc.);
  • Favor the setting up of a European reference network on rare diseases.

In practice

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Filière MUCO-CFTR - Hôpital Femme – Mère – Enfant - 59 Boulevard Pinel

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