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On the occasion of the international day of rare diseases which takes place on February 28, a survey reveals that the knowledge of the French population on the subject is still limited.
They affect 3 million people in France, 30 million in Europe and yet, the rare diseases and their impact are largely underestimated. This is what a survey carried out by OpinionWay for the Groupama Foundation notes, on the occasion of the international day of rare diseases which takes place this Monday, February 28.
Rare diseases: “Knowledge on the subject remains limited”
Cystic fibrosis, Rett syndrome, SMA-PME syndrome… As the Ministry of Health explains, “a disease is said to be ‘rare’ when it affects one person in 2,000”. According to the study, conducted among more than 1,000 people aged 18 and over, 90% of French people have already heard of it and 79% know that there are thousands of them; 22% of respondents “know a data subject” and 8% are “themselves directly concerned”.
Corn “knowledge on the subject remains limited and many French people minimize the impact of rare diseases”, reveals the survey, with one in two respondents estimating that rare diseases affect less than 50,000 people in France. Although the majority of respondents are aware of their disabling nature (65%), the difficulty of diagnosing them (89%), that they do not only concern children (93%) and that they are not all contagious ( 93%), a lack of knowledge persists around their treatment: “57% of respondents believe that it is possible to cure a rare disease, at a time when, unfortunately, the vast majority of the 8,000 rare diseases still remain without curative treatment”, underlines the study.
Rare diseases: improving the quality of life of patients
However, the general public seems to recognize the challenges of rare diseases, in particular the improvement of the quality of life of people who suffer from them which, he believes, must go through better medico-social care (64%) as well as greater training of doctors. The French also think that it is necessary to prioritize improving support for patients and their families (62%), better schooling for children with rare diseases (47%) and the development of new technologies to facilitate link between doctors and patients (e-health, telemedicine, teleconsultations, etc.) (42%). Finally, according to them, actions to inform the general public should be strengthened (43%) and awareness raised among the paramedical professions (31%).
Rare diseases: “a major public health issue” in France and Europe
“This barometer shows how essential it is to inform and raise awareness among the entire populationexplains Sophie Dancygier, General Delegate of the Groupama Foundation. Most rare diseases have no treatment, but care to improve the quality of life of patients exists or can be developed. Rare diseases are thus a major public health issue in France, which is positioned as a pioneering country on the subject in Europe and we are continuing our actions to contribute to this.“
In a column published on February 25 in Le FigaroYann Le Cam, Managing Director of EURORDIS-Rare Diseases Europe, believes that “because of the rarity of their disease, the challenges [les patients sont confrontés] can only be overcome through cooperation and solidarity at European level“, especially “the strategies” in terms of diagnosis, treatment, care and research as well as the “scientific and technological investments”.