Resources

Below are a few resources that can help get you up to speed with the rare disease community’s efforts:

ORGANIZATIONS:

 

KEY ISSUES:

Position Paper on Canada’s Orphan Drug Policy
Canadians suffering from rare debilitating or life threatening diseases need an Orphan Drug Policy that will assure Canadians with rare diseases have timely affordable access to the best therapies and provide competitive incentives for Canadian-based companies to engage in research and development to bring new therapies to market. This paper discusses the rationale for orphan drug policies and the recommendations for an effective “made-in-Canada” policy. » More info

Canada’s “Chance for Life” Strategy
Canadians with rare disorders need timely access to innovative therapies. Many of these represent the only effective therapy for severe, life-threatening disorders. They are often approved with “early-stage” evidence to allow patients access while additional data are collected. While some therapies are expensive on an individual patient basis, reflecting the high cost of development and small patient populations, the total budget impact may be very low. » More info

Private Members Motion (M-426)
On May 17, the House of Commons passed a Private Members Motion (M-426) on Rare Diseases. MP Don Bell from North Vancouver worked with members of all parties to gain support for this initiative and thankfully both the Conservatives and NDP joined the Liberal Caucus and voted unanimously for this motion. As a result the Government will now work toward addressing rare diseases in Canada, establishing and orphan drug policy and finally acknowledging that this is a critical issue for many Canadians. » More info