More than one in two French people believe that rare diseases affect less than 50,000 people in France. In reality, they are around 3 million.
A few days before the international day of rare diseases organized on February 28, the Groupama Foundation unveils this Friday the conclusions of a study conducted by OpinionWay, on the perception that the French have of these diseases.
Level of knowledge, preconceived ideas, avenues for improving their consideration, etc. are all themes addressed in this survey which aims to raise awareness among different audiences of the issue of these pathologies. Carried out on February 1 and 2, 2017 with a sample of 1,015 people, representative of the French population, the results reveal “very approximate” knowledge.
The Telethon effect
Indeed, even if 93% of them have already heard of rare diseases, 70% do not know exactly what it corresponds to and 6% have never heard of it. “These figures show that there is an indisputable” telethon effect “but that there is still a lot to do to make more and better understand these diseases”, indicates Sophie Dancygier, general delegate of the Groupama Foundation for health.
Good news, however, a large majority of people questioned know that rare diseases do not only affect children (95%), are not contagious (95%), nor all genetic (77%), that they are often long to last. diagnose (91%) and can be disabling (68%).
3 million people affected
However, the satisfaction stops there because more than half of them underestimate the number of people with these pathologies. According to the survey, 54% of French people think that rare diseases affect less than 50,000 people in France. In fact, they concern around 3 million.
“If the number of people affected by a rare disease is low, the total number of patients is important because there are today between 6,000 and 8,000 identified diseases … These diseases are generally serious, chronic, disabling and the vital prognosis is often at stake. If research advances, only 1 to 3% of rare diseases benefit from a curative treatment ”, continues Sophie Dancygier. However, 79% of French people believe that rare diseases can be cured. Conclusion, there is still work to be done to make them better known …
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