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Rare Diseases

It can be deadly for two people with cystic fibrosis to be in the same room.
Around this time last year, my world tilted upside down. My husband, the love of my life and anchor of my soul, was dying before my eyes. It started with gastrointestinal symptoms, headaches, fatigue. Doctors figured he had an ulcer. It was clear something was really serious on Father's Day 2016.
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
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.
The jackhammer pounded the garage floor all day. Periodically, a saw blade screeched and the jackhammer took a brief rest
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.