Tuesday , May 30 2023

Accelerate the diagnosis of rare diseases, an ambitious goal


One of the main focuses of the third plan for a rare disease, launched in July, is "diagnosis within one year of consulting a specialist". Today, the delay is on average for four to five years.

On July 4, 2018, France has a third rare disease plan (PNMR3), piloted by the Ministry of Health and the Ministry of Research. One of the main points of this plan is to "provide a quick diagnosis for everyone, in order to reduce the wandering and diagnostic latency". "This is the real crime we wanted to draw attention," explains Nathalie Triclin-Conseil at the Conference of the Rare Diseases Association (CARE & # 39; 18), the association she is leading.

Silvie Escalon, Head of Mission for Rare Diseases at the DGOS (Directorate-General for Nursing), recalls one of the ambitious PNMR3 commitments: "The goal is to diagnose within a year of specialist consultations in the state of knowledge, of course." Ambitious the goal. "A diagnostic trip is a labyrinth, it's a diagnostic routine of four to five years on average," says Iann Le Cam, general manager of Eurordis, who …

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