4th National Plan for Rare Disorders in France
On 25th Février, the 4th National Plan for Rare Disorders was finally launched in France. Long awaited, but delayed due to the political context, it aims to widen and pursue the work done with the previous Plans. It is based on 4 axes :
- Improving the life and care pathway (strengthening city-hospital links, strengthening Therapeutic Patient Education, developing specific actions for transition periods, raising awareness, training and informing, mobilizing investigator centers in research);
- Facilitating and accelerating diagnosis (support “L’Observatoire du Diagnostic” (French statutory organisation promoting diagnostic optimisation), Integrate fetopathology into the patient’s pathway, strengthen foresight in the field of genetics, promote antenatal and neonatal screening, give a diagnosis to each patient, promote new technologies and health data.
- Promoting access to treatments (strengthen access to innovative treatments, strengthen the development of new therapies, organize real-life data collection for early and compassionate access, support access to therapeutic innovation coordinated with Europe);
- Developing databases and biobanks (improve the collection and reuse of health data, strengthen biobanks and their use for research purposes, use health databases for research purposes, strengthen the sharing of health data in connection with Europe).
