2023-08-07 18:59:07
Quebecers who live with one or more rare diseases must overcome many challenges and obstacles in terms of care, according to a study by the Ethics Unit of the Montreal Clinical Research Institute (IRCM).
Among the obstacles identified, we find diagnostic errors, the condescending attitude of health care personnel when faced with unusual or poorly known symptoms, and the feeling of being the victim of discrimination in the professional field or in the family.
“These elements highlight the importance of better supporting and equipping people who live with one or more rare diseases,” commented Dr.re Ariane Quintal, bioethicist and first author of this work.
“The Quebec government’s initiative to adopt its very first policy on rare diseases is a source of hope for better care of these patients,” added Dr. Eric Racine, professor at the University of Montreal. and Director of the Pragmatic Health Ethics Research Unit, which examines crucial issues for citizens at the intersection of health and ethics.
There are 5,000 to 8,000 rare diseases in the world, according to information from the IRCM. About 80% of rare diseases are genetic and mostly hereditary.
Rare diseases also encompass other types of diseases, including autoimmune, infectious, toxic, malformative and rare cancers. Rare diseases might affect up to 8% of the Quebec population.
The Unit, affiliated with the University of Montreal, conducted the survey of 90 people living with one or more rare diseases in Quebec.
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