A group advocating for improved treatments and better supports for patients and families affected by rare disorders is lobbying the provincial government.
The Canadian Organization for Rare Disorders was registered this past week by Robin Martin, a consultant with 3Sixty Public Affairs. The primary purpose of their registration was to work with the government to establish policies or programs related to treatments and care for patients and families affected by rare disorders, including to ensure access to essential treatments for rare disorders, further research and development for therapies and deliver high-quality care. As well, the group wants to inform political health policy makers on federal policies that could have an impact on access to rare disease medicines, such as the National Strategy for Drugs for Rare Disorders, the Patented Medicines Price Review Board’s (PMPRB) Guidelines and the federal bill on pharmacare. They also want to hold discussions on how to best develop and support the implementation of a provincial rare diseases strategy.
New Registrations