Glossary
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Although each organization has its own mission, patient organizations all share a common goal of advocating on behalf of their communities for better care and treatment to ensure better quality of life.
The Role of Patient Organizations
The Role of Patient Organizations
Represent the community
Patient organizations play an important role in Quebec’s healthcare system, including in the clinical research ecosystem.
- Each organization focuses on a specific medical condition or a set of similar conditions. For example, Regroupement québécois des maladies orphelines (RQMO) represents all people living with rare or orphan diseases.
- These organizations have a mission to provide information and direct support to people living with the diseases and to their families, and to defend their rights and interests.
- They also raise public awareness about the medical condition they represent, the patients’ care trajectory and the daily lives of people with the condition.
Make it easier to access better care
Some organizations liaise between their communities and various health stakeholders such as:
- health and research staff
- the government
- public institutions
- the life sciences and health technologies sector
Through this role, these organizations can, for example, provide information about clinical trials to their communities to facilitate their access to them.
Support medical research
To help modernize the healthcare system, patient organizations are developing programs to accelerate and facilitate access to innovation in care and treatment, including programs that support and fund research.
Through their advocacy, these organizations also help implement public policies that meet the needs of their communities. For example, patient organizations may submit comments and be consulted as part of the provincial evaluation of health innovations (drugs, blood products, medical devices, and so on).
Directory of Patient Organizations
In the Clinical Trials Quebec Directory, you will find patient organizations working in Quebec that have been identified by our team.
Browse the Directory Browse the Directory
