- 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.
- 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.
- 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.
- 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.