or rare diseases
Canada is the only industrialized country that has no plan or policy for rare diseases. The Ministère de la santé et des services sociaux du Québec has been developing a strategy since 2019. Following this announcement, Montréal InVivo created a Project Committee to develop a strategic proposal.
A Strategic Plan on Rare Diseases
Although Quebec does not yet have a policy or action plan specific to rare diseases, the life sciences community and Quebec families affected by one of these diseases have proactively led several initiatives to raise awareness among the general public and the various governments to take action. In early 2019, the Quebec Working Group on Rare Diseases was mandated by the MSSS to issue recommendations on the organisation of services for the management of rare diseases. Complementarily, Montréal InVivo (MIV) has created a specialised Rare Disease Project Committee representing the entire ecosystem, to propose a national plan with the following objectives: 1) To allow Quebec patients suffering from a rare disease to have rapid and optimal access to therapeutic and diagnostic innovations; and 2) To improve the competitiveness of Quebec’s innovation ecosystem to attract investment and develop our competencies by drawing on international best practices.
This Strategic Plan first identifies important issues to meet these two objectives. Then, strategic recommendations are based on seven action themes aimed at addressing four major issues in the context of rare diseases.
The strategic proposal of this committee on rare diseases has the following objectives :
- Allow Quebec patients suffering from a rare disease to have quick and optimal access to therapeutic and diagnostic innovations;
- Make Quebec’s innovation ecosystem more competitive to attract investments and develop our skills by drawing on international best practices.
Interested in getting involved in this Project Committee ?
These diseases often present several challenges
A rare or orphan disease is said to be “rare” or “orphan” because it affects only a very small portion of a population. However, this rarity does not imply less effort in the management of the disease. These diseases often present several challenges in terms of diagnosis and treatment, which are becoming more and more personalized. Thanks to the growing affluence of new technologies in health in Quebec, research and development on rare diseases is faster and more accessible and researchers in this field are awarded more and more grants.