Rare diseases affect approximately 1 in 12 Canadians and can have serious consequences for both patients and their families. Many of these diseases have no available treatment. It is estimated that 80% of rare diseases are genetic and 75% involve children. With the lives of over one million Canadians affected, the impact of rare disease on the health care system — and Canadian society as a whole — is important.
On October 12-13, 2012 Orphanet-Canada and Orphanet-Quebec - in collaboration with Orphanet-France - are organizing two workshops on rare diseases to celebrate the launch of Orphanet in Quebec and Canada.
The October 12 workshop aims to present the Orphanet portal, and share experiences of information and knowledge transfer. For more information, please follow this link [PDF].
The workshop on October 13th, organized by Orphanet-Canada and the Institute of Genetics, aims to promote the exchange of ideas and innovative approaches in the field of rare disease research. The presence of French and Canadian participants will provide a context for developing partnerships and will ensure greater complementarity of efforts.