In Support of Canadian Rare Disease Plan and Orphan Drug Policy

This petition was published by Marc Rigaux on Feb 21, 2011

Given that there more than 7,000 different types of rare diseases, that 1 in 12 persons (2.7 million Canadians) is affected by a rare disease, most rare diseases have no known treatments or cure.

We petition the Canadian government to establish a Canadian Plan for Rare Diseases that includes:

(1) A standard definition of a rare disease as affecting 1 in 2,000 persons;

(2) An orphan drug regulatory framework to provide incentives and support for drug development;

(3) Research on rare diseases;

(4) Centres of expertise in diagnosis and treatment;

(5) Support for neonatal screening;

(6) National guidelines for approval and reimbursement of drugs;

(7) Support for patient organizations.

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