Rare Diseases

Canada's Rare Disease Strategy Needs to Become a Reality

Russell Williams | Posted 06.17.2015 | Canada Living
Russell Williams

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

TamilCulture | Posted 06.16.2015 | Canada Living
TamilCulture

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

Andrea Foster | Posted 09.27.2013 | Canada Living
Andrea Foster

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 bro...

How I Cope with My Twins' Rare Genetic Disorder

Andrea Foster | Posted 07.19.2013 | Canada Living
Andrea Foster

When she was only four months old, the unthinkable happened -- my daughter Annie experienced her first seizure, then she was subsequently diagnosed with Tuberous Sclerosis Complex (TSC). It was only three weeks later when her twin, Audrey, began having seizures, and her diagnosis of TSC followed.

New Developments in Gene Treatment Allow Kids To Smile Again

CP | Sheryl Ubelacker, The Canadian Press | Posted 04.01.2013 | Canada Living

TORONTO - Canadian researchers have used the power of genomics to identify the cause of a rare Parkinson's-like disease in children of one extended fa...