Canadian Government

Canada is the only developed country in the world that does not have a Federal Healthcare policy for persons with rare disorders.

With 1 in 12 Canadians suffering from 1 of over 7,000 different rare diseases, it is time our country stepped up and addressed this glaring inequality, and created a policy that encourages research, and provides funding for existing therapies.

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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