It is the “fruit of wide consultation with patient associations, health professionals, researchers and industrialists.” The government presents its 4th rare national diseases on Tuesday, February 25, aimed at promoting diagnosis, supporting the patient’s life care and care, but also encourages innovation.
“More than 7,000 rare diseases are identified and affect more than 3 million people in France,” said the press release, “diseases refer to more people we think.”
A plan with 223.5 million euros per year and that has several objectives, in particular the improvement of the life and care route “, in particular during key periods, such as the announcement of the diagnosis, the child/ adult transition, pregnancy, the Aging, “aging.”
Increase the number of expert centers
First axis of this new government plan: “support the course of care and life of patients with rare diseases and caregivers”, through improving access to care, coordination between hospital structures and city care or care The city or still optimizing the patient’s health trip.
This also implies the labeling of 132 new reference centers for rare diseases, an increase of 28%, for a total of more than 600 expert centers. In addition, the Ministry of Labor, Health, Solidarity and families have announced an envelope of almost 36 million euros in new credits for these centers.
Reduce average diagnostic time
Second objective of this plan: improve the diagnosis, in particular by reducing the average deadline, currently five years, to obtain one.
“The faster and early a rare disease, the better the attention will be and the more efficient the treatment will be,” said the minister responsible for health and access to care Yannick Neuder.
A detection that would involve neonatal detection, extended to three new pathologies this year, but also through genomic sequencing tools or other innovations on how fetopathology and prenatal detection.
The development of AI for therapeutic research
Third Axis of the Plan: Structure therapeutic research, encourage the repositioning of existing medications and organize real -life data collection to better evaluate processing effectiveness. It also provides “the strengthening of biobancos, the optimization of information systems and the development of artificial intelligence to use better data.”
Finally, the minister advocates a European plan in rare diseases improve the diagnosis and management for the benefit of all French and European patients.
“France is positioned as a leader in this public health policy at European level,” said Catherine Vautrin, “with this 4th plan, we continue to act tirelessly so that each patient, each family, can benefit from a rapid diagnosis, adequate management and a adequate management and access to treatments.
Source: BFM TV
