In November, you can wear a bow tie or grow a mustache. Personally, I prefer the first option. But these two campaigns, i.e. Noeudvember (Fondation Procure) and Movember, are also important for men’s health because they encourage men to get informed, get out and talk about it and consult for earlier detection and management of conditions that continue to kill far too many men annually. These campaigns receive a lot of visibility and donations, which is excellent.

Having been quite involved in the field of rare diseases in Québec over the past few months, I can’t help but think that they deserve to receive as much attention in the media and among the general public during their awareness month in February. It is certainly possible to draw inspiration from and build on others’ success to mobilize more people around this issue, which is fortunately now supported by the first rare disease policy in Canada.

However, I remain optimistic that the action plan on rare diseases that stems from this Policy will give the rare disease community (including patients, clinicians, researchers, caregivers, etc.) further means through which to accelerate and facilitate diagnosis, and better manage patients while giving a serious boost to research. Montréal InVivo’s Rare Disease Project Committee continues its work on concrete measures to be included in the Ministère’s action plan. It has shared with the government the results of a consultation on current initiatives in the rare disease ecosystem and continues to discuss a governance model that includes representatives from the entire rare disease community to better support the MSSS as the actions in the upcoming plan are rapidly being implemented. We are eager to know how all this will take shape as time is running out for patients, who are mostly children with degenerative diseases.

November is also the time when Parliament resumes. I understand that the session is going to be very brief as end-of-year vacations are around the corner. I therefore doubt that the much-awaited Bill 19 on access to health data will be put back on the parliamentary agenda this fall. More realistically, it will be early next year. But with the recent discussions between Québec and the federal government on health transfers, there has been much talk about the importance of having reliable health data. The Minister of Health now seems willing to share provincial data with the federal government. Whatever happens, the importance of a system that allows access to and analysis of health data is well established. Let’s hope that current discussions on the topic will ramp up the legislative agenda and implementation of a law providing for easy and secure access to anonymized health data to benefit all Quebecers.