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.
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.