There are more than 7,000 rare disorders and, by definition, each one of them impacts a small number of people. But overall, one in 12 Canadians suffers from a rare disease and about two-thirds of them are children. Adopting a strategy will give hope to many Canadian families who are struggling with the patchwork support systems throughout the country.
Imagine driving into a tunnel where you can only see straight down the middle, and nothing on either side: that is what life is like living with a rare genetic eye disease called Retinitis Pigmentosa. I was 21 when I was diagnosed, excited to live life, travel, and experience so many things, but now I've been given a time frame for how long I'll be able to see the world around me.