New drive to treat rare diseases
France aims to be world leader in treatment of rare illnesses, but critics say funding of latest plan is not enough
A NEW plan to make France a world leader in the treatment of rare diseases has been launched.
Such diseases affect about three million people in France, and the announcement was timed to coincide with the International Day for Rare Diseases.
Of the 7,000 conditions known in France, 80 per cent are genetic in origin.
The minister for research, Valérie Pécresse, and the health minister, Nora Berra, announced that €180 million would be dedicated to help research over the next three years.
Mrs Pécresse said: "The idea is to be the leader in Europe, the world even, in certain treatments.
"This means we need to catch up in a certain number of areas where we were world leaders at the beginning of the 20th century and today have been overtaken by other countries."
Where the first plan, launched in 2008, focused on improving the diagnosis of rare illnesses by providing more centres, the second plan focuses on managing subsequent care and treatment.
The president of the Association française contre les myopathies (AFM), Laurence Tiennot-Herment said: "It is very important to ensure continuity of care from the first diagnosis and research, through care management.
"We can see at the moment that there are not really any signposts, and this is a shame because care management is extremely important for the patients."
She added that the current funding of €180m would need to triple in order to meet requirements.
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