Unfortunately, we cannot yet detect all of these diseases – two in particular evade government programmes. In numbers, we are talking about one in 39 people carrying a hereditary disease in Saguenay-Lac-Saint-Jean as well as in the North Shore and Charlevoix.
Pierre Lavoie, spokesman for the Foundation for Research and Action in the Field of Genetic Diseases, believes that the situation is unacceptable.
“The National Institute for Excellence in Health and Social Services (INESSS) decided to conduct the same study we did at the time to validate the programme. This is what we find anomalous,” he explained to the publication. Novo Info 17. “In Quebec, there are 100 orphan and debilitating genetic diseases that have no cure and must be discovered, but it takes a long time. Currently, we have been waiting for cystic fibrosis for three years.” […] We imagine to others that it will take years or even decades.
The latter in particular asks Health Minister Christian Dube to “go towards common sense.”
Mr. Lavoie also regretted the slow pace of prevention and awareness campaigns on these genetic diseases among the population.
“In Saguenay-Lac-Saint-Jean, there are about 274,000 inhabitants and there are 300,000 people from our region, with parents or grandparents from here, who are outside the region. These people are in danger. It is very difficult to reach them because we cannot advertise.”
Watch his full interview in the newsletter Novo Info 17.
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