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.

1. Micro-grant Funding. Through an incredibly creative micro-grant strategy (up to $3,500 per year), RDF was able to unlock knowledge that lead to treatments or cures for 11 diseases. They also prompted discovery of 15 new genes that cause a rare disease. They might be called micro grants but their impact is mighty.
2. Parent2Parent Support. One of the reasons identified in 2008 as an impetus for establishing International Rare Disease Day was an inadequate social network to support individuals with rare disease and their families. Rare Disease Foundation also recognizes this gap and organizes Parent2Parent Resource Networks to foster organization and empowerment of the rare disease community. These are local forums for cross-disease information sharing on common topics impacting those with rare diseases, meeting monthly at several locations across our Province. RDF also offers an online forum, and a web broadcast of presentations by the guest speakers.

If you are interested in learning more, come out to the Rare Disease Day Event on March 1^st at 6pm. The event will be hosted by the Rare Disease Foundation at the Chan Auditorium, BC Children’s Hospital, 950 W. 28th Avenue.