Canadian Organization for Rare Disorders
Registration:
13
of
14
(2022-11-11
to
2024-05-03)
Policies or Program
- Engagement with officials on issues related to rare disorder and orphan drug policies in the context of the development of national pharmacare.
- Establish Health Canada policies or programs related to orphan drug policy to address treatment for rare disorders, including part of any national pharmacare program or strategy
- Establish Health Canada policies to ensure access to essential treatment for rare disorders
- Establish Innovation, Science and Economic Development Canada policies related to research and development of treatments for rare disorders
- Scientific Research and Experimental Development Tax Incentive Program as it pertains to research and development of treatments for rare disorders
Policies or Program, Regulation
- Share perspectives of the rare disorders patient community on drug pricing issues, specifically regulations and guidelines related to the Patented Medicine Prices Review Board.
Regulation
- Regulatory amendments to the Food and Drugs Act Regulations to implement an orphan drug regulatory framework.