Rare Diseases


Clinical Trials Offer Hope for Canadians

Improving the climate for clinical trials will also attract research investment which will in turn create jobs in healthcare and within the knowledge economy for Canadians. Clinical trials are the building blocks for innovation in healthcare and allow Canadians access to life changing innovations

Canada's Rare Disease Strategy Needs to Become a Reality

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.

As My Eyesight Fails, the World As I See it Is Changing

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.

Finding the Joy in Monotony

The jackhammer pounded the garage floor all day. Periodically, a saw blade screeched and the jackhammer took a brief rest. Next, the old floor was broken up and carried away by the bucket full, into t...