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Define a “rare disorder” and Implement a national drug policy

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We request the House of Commons Define a “rare disorder” as a life-threatening or chronically debilitating condition or disease with a prevalence in Canada of fewer than one in 2,000 people.

Implement a national drug policy in regard to the treatment of rare disorders

Because

• Canadian patients who suffer from rare disorders lack access to clinical trials and new drugs that are available in other countries

• it is essential to ensure that all patients have equal and timely access to therapies for life-threatening and debilitating diseases

• continuing research investment by Canadians in genomics, proteomics, cell therapy and regenerative medicine will lead to the development of new therapies for rare disorders

• it is reasonable to assume that many new therapies for rare disorders will not be brought to market due to the low number of patients relative to the high cost of development

• Canada is one of few developed countries to lack a definition for rare disorders

• policies enacted in other countries to encourage the development of treatment of rare disorders have enabled the development of new treatments for patients

• Canadians would enjoy enhanced health and economic benefits if incentives were provided to assist Canadian innovators in developing and marketing drugs for use in the treatment of rare disorders.



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