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 undisputed highlight of the 2014 event was the transformation of the iconic CN Tower with blue lighting to celebrate Rare Disease Day. Elsewhere in Canada local communites got together for bake sales, dinners and auctions, and a "Wear that you care" day where participants paid a small fee to wear their jeans for the day, with all money going to EDS 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.
You can also get involved! Let us know if you know of any events that are not listed here. Write to us at firstname.lastname@example.org.
Rare Disease Day celebrations with an iconic Toronto moose.
The Board of Directors stands together proudly at the CN Tower.
Puratos Canada employees sporting 'Canadian Tuxedo' in honour of Rare Disease Day. Google 'Canadian Tuxedo' for a laugh :)
All the 'guys' in Tiffany's department show their support.
The glow of blue light on the CN Tower observation deck.
Tiffany Skladan leads the activities. Shown here with the employee with the 'best outfit'.
The employees at Puratos Canada dress in jean to support those with faulty 'genes'.
Puratos Canada Employees on Rare Disease Day.
Loonie auctions are so much fun and the best thing is you get your dinner cooked for you by an executive Chef, Chef Doris! You can to bid on auction items by tossing a loonie in the basket. It's fun, fast and you will be supporting a great cause. Bring the family or meet your friends for dinner.
Toronto at night as seen from the top of the CN Tower.
Educational information on Ehlers-Danlos Syndrome and Rare Disease Day.
EDS Canada celebrates Rare Disease Day at the CN Tower.
The CN Tower serves as a beacon of hope to those with rare diseases.
The CN Tower lights up BLUE for Rare Disease Day.
Events in Canada
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.