February 28th is International Rare Disease Day
Did you know that February 28th is International Rare Disease Day? Why does it matter you might ask? Because it prompts us to have this important conversation. Rare Disease Day was established in 2008, as way of building awareness and pointing to the fact that treatments for individuals and social supports for individuals and their families are still insufficient.
In general, the problem is in funding. Statistics tell us that 1 in 12 individuals will be diagnosed with a rare disease, usually in childhood, and of those 1 in 4 will not live to age 10. In Canada, close to 3 million people are impacted by rare disease. Rare diseases are varied (over 7,000 known diseases), they are complex and unique and as such don’t necessarily attract large pools of funding. And yet the challenges that individuals and their families are trying to navigate are very real and highly complex.
Luckily, here in BC we have an incredible organization called the Rare Disease Foundation (RDF) that does the work that’s necessary. It mobilizes capital and resources to support those on a rare disease journey. In its 8 years, Rare Disease Foundation has funded over 400 projects totalling over $1.3 million.
If you are interested in learning more, come out to the Rare Disease Day Event on March 1st at 6pm. The event will be hosted by the Rare Disease Foundation at the Chan Auditorium, BC Children’s Hospital, 950 W. 28th Avenue.
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