The Government of Quebec on Monday unveiled its policy for rare diseases which affect approximately 700,000 people in the province in order to improve the accessibility of health care and services adapted to the needs of patients and their families.
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“This policy is a big step forward for our entire community,” said Marilyne Picard, parliamentary assistant to the Minister of Health and Social Services, in a press release.
“Rare diseases involve important issues that concern many Quebec families. I know personally what this reality is on a daily basis.
“I know the difficulties that such a situation entails, as well as the importance of improving access to the services offered by the health and social services network to help people who live with this reality,” added member, who is herself the mother of a disabled child.
A rare disease is a disease that affects fewer than 2,000 people. There are between 5000 and 8000 in the world.
In Quebec, it is estimated that approximately 700,000 people are affected, 50% of whom are children. These diseases include cystic fibrosis, several types of muscular dystrophy or hemophilia, autoimmune diseases and diseases of toxic or infectious origin.
The Quebec policy for rare diseases is divided into three main areas: awareness and training of health professionals, easy and equitable access to diagnosis, care and services, and the promotion of research, innovation and data collection .
“The lack of knowledge that we have of rare diseases in the medical community leads to many challenges in terms of accessibility for those affected and their families”, indicated the Minister of Health and Social Services, Christian Dubé, in this document. regarding fifty pages which recognizes that “access to these services for people living at a distance from major centers is an additional challenge”.
“A big step”
The Fondation du Grand Défi Pierre Lavoie “strongly applauded” the creation of a national policy on rare diseases.
“I don’t believe it yet,” said Pierre Lavoie, the founder, in a press release. We’ve been waiting for such news for so long. […] We can say today that this is a big step in the recognition of this issue […]. It is as if the victims of orphan diseases had finally found an adopted scientific family to help them and [soutenir].»
“I spent a lot of time in hospitals for my two children and I saw the powerlessness of doctors to save their lives. There’s nothing worse than being told “nothing can be done for you”. Today, we feel that the tide is turning, that an opening has been created,” added Mr. Lavoie.
