Implement Canada's Orphan Drug Policy #RareDiseaseDay
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Only 60% of treatments for rare disorders make it into Canada and most get approved up to six years later than in the USA. While each rare disease affects only a small number of individuals, there are more than 7,000 rare diseases that together affect 1 in 12, or nearly 3 million Canadians. Most of these are children. However, awareness, knowledge and treatment of most of these diseases are still limited and fragmented across the country. All patients deserve the same timely and quality health and social care regardless of what they suffer from or where they live.
A federal Orphan Drug Regulatory Framework is the cornerstone for a definition of rare diseases and will allow Canada to be partner in the research, development, and approval of rare disease drugs at the same time as Europe and the USA. In the fall of 2012, the federal minister of health announced plans for developing an orphan drug framework for Canada. The minister stated that the government “will introduce a new approach that will better support the development and authorization of drugs for rare diseases...”. However, 5 years later Canada has still not implemented a policy.
On internationally recognized Rare Disease Day, Feb 28 2017, we call on the Canadian Minister of Health, the Honourable Jane Philpott, to implement Canada’s Orphan Drug Regulatory Framework.
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