There are so many ways to participate in Rare Disease Day. Let’s join together to make Rare Disease Day 2017 the best one yet.
What is Rare Disease Day?
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness for people living with a rare disease and their families. Since its inception in 2008, Rare Disease Day is now celebrated worldwide in over 80 countries.
What can I do to participate?
Host a Rare Disease Day Event
Your patient group or organization can host a fundraiser, educational event or even have a bake sale in support of Rare Disease Day. Please remember to share your event with CORD, as we will promote all Rare Disease Day events and activities on our social media. Ideas on Rare Disease Day activities can be found on our website at: https://www.raredisorders.ca/content/uploads/Rare-Disease-Day-Activities-Ideas.pdf and also on the official Rare Disease Day 2017 website at: http://www.rarediseaseday.org/article/get-involved. This website is where you can download the free downloadable pack which contains useful items such as infographics, posters, flyers, and social media banners.
Light up a Monument
Help us to light up Canada in blue. Did you know that many Canadian landmarks, monuments and facilities support charitable organizations by using their lighting systems to promote awareness? Help CORD to spread awareness by asking your local facility to light up in blue in support of Rare Disease Day.
Tell us Your Story
CORD wants to hear from you! This is a great way to raise awareness about this year’s theme: how research brings hope to those living with rare disorders. Send us your testimonials about the important work the rare disease community is doing in the area of rare disease research. We are hoping to feature success stories and/or challenges from all provinces and territories on our social media. Each testimonial can be up to a maximum of 140 characters. All testimonials will be entered in a draw to win one of two Indigo gift cards (valued at $25).
Please submit your testimonial to: https://www.surveymonkey.com/r/researchtestimonials
We can only make Rare Disease Day a success with your help.
Get involved because YOU can make a difference!
MEDIA ALERT: Canadian Organization for Rare Disorders urges Ontario to implement Canada's first Rare Disease Strategy TORONTO, Feb. 27, 2017 /CNW/ - On International Rare Disease Day, patient representatives from the Canadian Organization for Rare Disorders (CORD) will meet with John Fraser, Parliamentary Assistant to the Minister of Health and Long-Term Care and other MPPs to share their experiences of living with rare disorders.
March 30, 2017
Sheraton Vancouver Wall Centre, 1088 Burrard Street, Vancouver, BC
Date: March 30 - 31, 2017 Location: Sheraton Vancouver Wall Centre, 1088 Burrard Street, Vancouver, BC REGISTER HERE Living Rare: With Research, Possibilities are Limitless With Patients, Anything Imaginable is Achievable! 2-Day Conference: March 30-31, 2017 OBJECTIVES Share experiences of living ... enhanced by a rare condition Connect with groups that improve rare living Create inspired and inspiring solutions within Canada’s Rare Disease Strategy Rare Disease Day 2017 UPDATED DRAFT AGENDA Through videos, testimonials, and facilitated discussions, we will provide an opportunity to get to know the people living with the rare conditions and their patient groups or organizations. Each of the four panels will be organized around one of the four core pillars of Canada’s Rare Disease strategy: diagnosis, expert care, community support, and access to therapy. The fifth pillar, research, will be integral to addressing issues identified in each of the other areas. REGISTER HERE Refund Policy: Cancellations received a minimum of 15 days prior to the event will receive a refund minus an administrative fee of $15.00. This fee covers the cost of processing the registration and refund. Cancellations received after the 15-day deadline and no-shows are non-refundable.