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Saskatoon family wants a rare disease strategy for Canadians

Click to play video: 'One Saskatoon family is asking for Canada to develop a rare disease strategy for Canada' One Saskatoon family is asking for Canada to develop a rare disease strategy for Canada
WATCH: Canada does not have a rare disease strategy to help allow those suffering from uncommon diseases to have greater access to medications – Oct 9, 2019

Cassidy Evans is a normal 11-year-old girl — she loves jumping on her trampoline, bowling and when she grows up, she wants to be a lifeguard.

Evans also has cystic fibrosis and spends almost three hours a day doing therapy and taking medications to keep her body strong.

READ MORE: ‘He’s the only child living with CLN2 in Saskatchewan’: community rallies for 4-year-old with rare disease

Cystic fibrosis affects the respiratory and digestive systems of almost 4,300 Canadians, with the median age of survival estimated to be just over 53-years-old.

Evans and her mother, Kimberly Evans, have been advocating the government for a rare disease strategy.

Kimberly said the strategy would allow for better access to medication and research.

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“Rare disease, unfortunately, has such a minimal population to these diseases that it’s really, really hard to get access to medications,” she explained.

They are keeping a close eye on the election. They’ve been asking door knocking candidates where they stand on developing a rare disease strategy for Canada.

Kimberly Evans said many candidates don’t know.

“To know that politics and bureaucracy is getting in the way of [my daughters] health,” she said.

Evans said Ireland has a rare disease strategy that is working to help those with uncommon diseases and she wants Canada to step up.

READ MORE: Cassidy’s Lemonade Stand raising awareness & funds for cystic fibrosis

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“As a parent knowing that my daughter’s health is on the line because of a federal budget is almost more than I can bear,” she said.

Although Cassidy has to take over 30 pills a day and spend hours each day doing treatments, she keeps her spirits high and wants to keep working towards making life easier for anyone with a rare disease.

“I know that if I keep pushing and I do what I need to do then it’s going to make a big difference,” she said.

An active petition with over 18,000 names on cystic fibrosis website is collecting signatures to give to the next Canadian government with the hope they will see change.

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