HealthCanada Embraces an Orphan Drug Framework

Cara Hesse | December 11, 2012

This past month, 2.8 million Canadians with rare diseases had cause to celebrate with two announcements from the Canadian Government. Reversing a 16-year old policy, HealthCanada will now establish a rare disease framework that could potentially lead to a Canadian Orphan Drug Policy. Ongoing discussions about the best methods to accomplish a national orphan drug policy are encouraging, and may ultimately lead to, regional policies at the provincial level. 

HealthCanada also announced the launch of Orphanet-Canada, which will provide all Canadians access to an extensive database of services focused solely on rare diseases. In addition to information on specific rare diseases, searches will identify centers of excellence, patient organizations, professionals and institutions, and orphan drugs that are available in Canada. According to the Canadian Organization for Rare Disorders (CORD), the Orphan Drug Policy and Orphanet opens the way for a Canadian Plan for Rare Diseases, that could include guidelines for newborn screening, diagnoses, and the creation of Centres of Reference.

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