I'm Lighting Up Canada for Rare Disease Day

That feeling when it's Rare Disease Day and you realize that almost 90% of the #LightUpForRare lightings in Canada are because of you...! 🙌🏽🥳

I checked out the Canadian Organization for Rare Disorders list of lightings online to see what locations are participating for Rare Disease Day, and saw there are 29 locations listed across Canada.

26 of those locations, across 18 cities and 4 provinces, are approvals I received! 🫶🏽✨

Rare Disease Day is about creating visibility and community for the 1 in 12 Canadians living with a rare disease.

This time last year, I'd never met anyone in person who also has Central Core Disease. This month, I've actually messaged or had calls with SEVEN people who do, one of whom I got to meet in person last year!

I never would have found them, or rather, they never would have found me, if I hadn't started talking about my rare disorder. That's why I love seeing more people sharing their stories.

Before I started being open about my disability, I thought there was no point in talking about it, because nobody would understand. Now I see the importance of sharing, so that other people can understand.

Because every time someone steps up and says who they are, the world becomes a better, more interesting place. ✨

Happy Rare Disease Day! 🩷🩵💜💚