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Between diagnosis and management of a rare disease, it takes on average five years. The new Rare Disease Plan aims to reduce this diagnostic wandering to one year
For Professor Christine Bodomer Skandalis, Reference Center for Rare and Genetic Dermal Expression at Necker Hospital in Paris (AP-HP), it is vital to retain physicians in rare disease research centers. Because until now, once trained, they tend to go to other non-specialized hospitals. " I think the best way to reduce the diagnostic wandering is to ensure the sustainability of the expertise ," says the specialist. Without this " expertise acquired during a given time is lost and, each time, we start again from scratch. " What, according to her, is done " to the detriment of efficiency in the clinical diagnosis, in the daily care, in the knowledge of the patient, of his mentality, in his culture "
To develop the prenatal screening
This 3 th plan also aims to increase the number of rare diseases detected at birth, thanks to prenatal diagnosis. Finally, it provides for the establishment in 2019 of an international database on rare diseases. All for a budget of 700 million euros.
But according to the badociations, it is insufficient. "In this envelope of 700 million euros, the largest part corresponds, in fact, following the funding centers of reference on rare diseases and health sectors" says Christian Cottet, director General AFM-Telethon. "It's not new money" he says. " There is a hundred million euros which corresponds to new measures which, indeed, 20 million euros for research, but 20 million over 5 years, it is notoriously insufficient" regrets the director general
A disease is considered rare when it affects less than one person in 2000. In France, 3 million people would suffer, mostly children.
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