Quebec Policy and Action Plan for Rare Diseases
In June 2022, after years of advocacy by the RQMO, rare disease associations, doctors and researchers, the Quebec Ministry of Health and Social Services (MSSS) published the Politique québécoise pour les maladies rares: Pour une meilleure reconnaissance et prise en charge des personnes atteintes de maladies rares (Quebec Policy for Rare Diseases: For better recognition and care of people suffering from rare diseases. Only in French)
Finally, in May 2023, to follow up on the Policy for Rare Diseases, the MSSS unveiled its Action Plan on Rare Diseases 2023-2027 (only in French) covering 3 areas:
- Awareness and training
- Facilitated access to care and services
- Promotion of research, innovation and data collection.
The RQMO’s efforts to get a strategy/policy in Quebec
When it was created in 2010, one of the objectives of the Regroupement québécois des maladies orphelines — aside from its main mission of informing and supporting people with rare diseases and their families — was to help develop a “National Rare Disease Plan” for Quebec. A plan similar to the one that existed in France since 2005 and that all the countries of the European Union had to develop and adopt. Following discussions with the RQMO, in 2011, le liberal Health minister, Yves Bolduc, called for the creation of a committee to elaborate a « Stratégie québécoise en matière de maladies rares ». (View history of procedures below).
On February 26, 2015, the RQMO organized a Summit on Rare Diseases where a working group met to establish a rare disease strategy for Quebec. This summit brought together different stakeholders concerned by issues related to rare and orphan diseases (people affected by rare diseases, caregivers, representatives of rare disease associations, doctors, other health professionals, researchers, representatives of the pharmaceutical industry and biotechnology, etc.).
See here a summary of the Quebec Strategy for Rare Diseases proposed by the RQMO.
The complete Strategy as updated in 2019.
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History of steps taken
| February 28, 2010 | Creation of the Regroupement québécois des maladies orphelines (RQMO)/Quebec Coalition of Oprhan Diseases |
| October 2, 2010 |
RQMO survey of nearly 300 people with rare diseases and caregivers on their needs and priorities for rare diseases in Quebec. First RQMO conference in Quebec Opening speech by the Minister of Health, Dr. Yves Bolduc: « That every citizen of Quebec affected by or carrying a rare disease receives the services that he or her needs for their illness… A question of social equity » Guest speaker: Ms. Viviane Viollet, president and co-founder of the Alliance des maladies rares, France. |
| August 29, 2011 | Publication by INESSS (National Institute of Excellence in Health and Social Services) of the report « Prise en charge des maladies rares – Expériences étrangères »(«Management of rare diseases – Foreign experiences ») (work done following a mandate given by Minister Bolduc) |
| November 26, 2011 |
RQMO Forum on rare and orphan diseases « Integrating rarity into our health system » Dr Yves Bolduc announces that he will create a committee which will have « the mandate to develop a Quebec strategy for the management of rare diseases ». |
| February 2012 | The Ministry of Health and Social Services agrees to finance the Orphanet-Québec project for one year. The RQMO – in partnership with Orphanet in France and the Department of Medical Genetics of the McGill University Health Center – lists and enters into the international Orphanet database activities and resources relating to rare diseases in Quebec. A project which began thanks to a grant from the Commission permanente de coopération franco-québécoise (Quebec’s ministry of International Relations). |
| October 12, 2012 | A joint French-Quebec conference on Orphanet, the portal for rare diseases and orphan drugs.Organized by the RQMO. |
| February 21, 2013 |
RQMO awareness day at the National Assembly in Quebec . The Minister of Health, Dr. Réjean Hébert, made a statement in the chamber highlighting International Rare Disease Day, the RQMO, and the courage of those affected and their families. |
| September 2013 | Publication by INESSS (National Institute of Excellence in Health and Social Services) of the report « Advisability of expanding the Quebec newborn blood screening program in Quebec » (work of an INESSS committee mandated by Minister Bolduc and in which the RQMO participated) |
| October 2013 | Meeting of the RQMO with the political attaché of the Minister of Research, Mr. Pierre Duchesne, in the company of the Fondation du Grand Défi Pierre Lavoie, the Canadian Association of Familial Ataxias, Scleroderma Quebec and the Foundation on Leukodystrophies to discuss funding and directions for research on rare diseases. |
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February 21, 2014 February 28, 2014 |
Lunch conference organized by the RQMO in Montreal:« Pour un meilleur accès aux traitements pour les maladies rares – Une question d’équité (For a better access to treatments for rare diseases – A question of equity)». Ms. Mireille Mathieu from INESSS, panelist during this activity, promises a consultation in 2014 on the evaluation of orphan drugs. Motion highlighting International Rare Disease Day presented to the National Assembly by the Minister of Health, Dr. Réjean Hébert. |
| October 8, 2014 | Breakfast conference by Pierre Lavoie (Fondation Grand Défi Pierre Lavoie and Association de l’acidose lactique du Saguenay-Lac-St-Jean) in front of Members of the National Assembly. |
| November 22, 2014 | Educational day on rare diseases – RQMO School of Rare Diseases : « Rare diseases, elsewhere and here » |
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February 26, 2015 June 12, 2017 July 3, 2017 November 19, 2018 February 22, 2019 February 28, 2019 |
Summit on rare diseases: a day of discussion between patients, caregivers and patient representatives and various health stakeholders (doctors, other health professionals, researchers, representatives of the pharmaceutical industry, etc.) on around forty proposals to include in a strategy. Writing of the first draft of the “Quebec Strategy for Rare Diseases”. Press briefing at the National Assembly with the MNA, Mr. François Paradis (CAQ) , about the relevance of a Quebec strategy for rare diseases. Video of the press briefing Meeting with the Minister of Health, Dr Gaétan Barrette. Promise of thecreation of a committee that will study a Quebec Strategy for rare diseases with the involvement of the Regroupement Québécois des Maladies Orphelines (RQMO). Announcement of the establishment of the Quebec working group on rare diseases by the MSSS without representatives of patient organizations. Hosted aForum on Rare Diseases with l’Alliance des patients pour la santé and Cystic Fibrosis Canada. Government representatives and MNAs present. Publication by the RQMO of the updated version of its proposed Quebec Strategy for Rare Diseases. Delivered to government officials. Meetings of MNAs at the National Assembly during the week of February 25. On February 28, 2019, International Rare Disease Day, the Minister of Health and Social Services of Quebec, Ms. Danielle McCann announced that a strategy for rare diseases would be elaborated, that the RQMO and other associations would be consulted and that it would ensure that patients suffering from rare diseases have access to their treatment. For more information. |
November 15, 2019 – Representatives of the RQMO and its member associations (Quebec Sickle Cell Anemia Association and Association des patients immunodéficients du Québec) met with the Minister of Health and Social Services, Ms. Danielle McCann. We are pleased to find out that an action plan is being drafted for rare diseases in Quebec, based on the recommendations of the Working Group that was set up in the fall of 2018 following our meeting with the former Minister of Health, Dr. Gaétan Barrette. We are also very pleased with the fact that the recommendations of the Working Group seem aligned with the proposals made in our « Quebec Strategy for Rare Diseases ».
