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In Support of Canadian Rare Disease Plan and Orphan Drug Policy
Petition Background (Preamble):
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.
The In Support of Canadian Rare Disease Plan and Orphan Drug Policy petition to Canadian Government was written by Marc Rigaux and is in the category Health at GoPetition. Contact author here. Petition tags: rare disease, orphan drug, federal policy, patient advocacy