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 Diseases 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.