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!
November 17, 2017
Toronto & Webcast
ARE YOU READY? On January 1, 2018, Ontario will roll out OHIP+. The transition will apply to all kids and youths under 25, including those currently on private drug insurance and including all drugs, including those currently provided under EAP. The Canadian Organization for Rare Disorders has received many questions about issues that could affect a smooth transition. What if the child’s drug is not listed in ODP or EAP? What if the criteria between the current private plan and OHIP+ are different? What about the private support program? What if … what if …? CORD invites patient groups, clinicians, industry, insurers, and other stakeholders to join Vivian Leong, A/Director for OHIP+ to work through potential issues to ensure a SMOOTH transition on January 1st and beyond. Please join us for a F2F and Webcast working session on November 17, 2017 from 9:00 am – 11:30 am. Space in person is strictly limited to 30 persons but attendance by Webcast is virtually unlimited.