Government launches 3rd plan to accelerate diagnosis and support research

The government unveiled on Wednesday its 3rd national plan on rare diseases for the period 2018-2022. The goal of this program will be to provide patients with a faster diagnosis, to reduce the uncertainty period to a maximum of one year.

"Only one person with rare disease out of two has an accurate diagnosis" the official document of the Ministries of Health and Research. "And the search for diagnosis exceeds five years for more than a quarter of people." Called "diagnostic wandering", this delay is one of the main obstacles faced by patients, not to mention the virtual absence of curative treatment.

A network of centers

This third plan includes 55 measures, among which the increase in the number of diseases detected at birth (there are currently only five), or the setting up of a national data bank in 2019.

The first national rare diseases plan (2005- 2008) created the reference centers. There are 387 today scattered throughout the country, each dedicated to a group of diseases to improve diagnosis and care. The second plan (2011-2016) set up 23 "rare diseases health channels" to oversee these centers.

"far from the stakes" measures for the Telethon

The budget of this 3rd rare diseases plan is 700 million euros, of which 20 million is devoted to research. A "drop of water facing the vastness of needs", deplores in a statement the badociation AFM-
Telethon. It itself invests every year "60 to 70 million euros in the research and development of therapeutics."

"If the intentions are good, the concrete measures announced and the financial means identified seem very far from the stakes" worries the badociation. Of the 700 million budget planned, 597 are devoted to reference centers. A few months ago, the leaders of the 23 sectors had protested against the collection of credits by hospitals "general" for purposes other than rare diseases.

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