This Sunday, February 28th is Rare Disease Day!
A rare disease is defined as affecting fewer than 1 in 2000 people. The small population size of these diseases means that often treatment options and resources are limited. However, together there are over 300 million people worldwide living with one or more of the 7000 known rare diseases.
Rare Disease Day helps raise awareness for the 300 million strong that are affected, by advocating for equitable access to diagnosis, treatment, health and social care and social opportunity for those in the rare disease community.
In Canada, only 60% of available rare disease treatment options are approved. Some of these treatments were approved up to 6 years after receiving approvals in the US and Europe. You can support Canada’s rare disease community by checking out the Rare Disease Day events happening near you at https://www.rarediseaseday.org/country/ca/canada.
This year, MEDUCOM team members advocated for this important day by virtually gathering for a group photo displaying the Rare Disease Day official colours.
No matter how you choose to recognize Rare Disease Day this Sunday, be sure to remember this year’s key message:
Rare is many.
Rare is strong.
Rare is proud.
More Resources:
Keep track of events happening world-wide by following @rarediseaseday on twitter Check out the official Equity Toolkit to learn more about being and advocate:
View the Canadian Organization for Rare Disorder’s Strategy here: https://www.raredisorders.ca/about-cord/
-Erin
