#What Do I Know About Rare Disease ?

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What is the average time it takes to diagnose a rare disease?

4 years is the average length of diagnostic wandering for a person with a rare disease Diagnostic wandering is responsible for a possible worsening of the patients’ condition, a delay in the possibilities of genetic counselling and a waste of medical resources (multiplicity of diagnostic consultations). One of the issues at stake in diagnostic wandering is the delay in implementing specific treatment – when it exists.


More informations on Plan national des maladie rare 3