Rare Disease Dayin Canada
Patient organisations in Canada have engaged in Rare Disease Day since its first year in 2008, arranging gala dinners and exchanges between researchers and patients, as well as regional events across Canada.
The Canadian National Alliance, the Canadian Organization for Rare Disorders (CORD), serves as the voice for the estimated 1 in 12 Canadians affected by a rare disease. They can be contacted directly to help you find a patient organisation locally which may have more information about a specific rare disease or disorder. Find their contact information on the bottom of this page.
Below you will find more information about what is happening in 2014 for Rare Disease Day along with contact information of the organisations holding the event.
You can also get involved! Let us know if you know of any events that are not listed here. Write to us at email@example.com.
National Alliance representing Canada
CORD is Canada's national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.
CORD represents the orphan disorders community in the development of Canadian Orphan Drug Policy, including the proposed Expensive Drugs for Rare Disorders program within the National Pharmaceutical Strategy CORD is working to promote state-of-the-art Newborn Screening in all provinces and territories. CORD is working to ensure Canada's Clinical Trials Registry works effectively for those with rare disorders. CORD is committed to increasing access to genetic screening and genetic counseling for all rare disorders.