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In Support of Canadian Rare Disease Plan and Orphan Drug Policy
Petition published by Marc Rigaux on Feb 21, 2011
1257 Signatures 
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Target: Canadian Government
Region: Canada
Web site: http://befair2rare.com
Petition Background (Preamble):
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.
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.
Petition:
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.
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
