The Sept. 12 announcement coincides with this year’s back-to-school season. The module contains information to help people understand this complex disease. It has an interactive format designed for both professional and personal purposes that lets users learn at their own speed.
Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults. As Cystic Fibrosis Canada highlights in its 2016-17 annual report, more than 4,100 patients in Canada attend one of 42 specialized CF clinics. Almost 60 percent of Canadians living with CF are adults, with the oldest being nearly 80 years old. The current estimated median age of survival is 51.8 years, and more than 40 percent of all new CF diagnoses in Canada were made through newborn screening programs.
In Canada, 59 percent of CF patients are diagnosed within their first year of life.
Cystic Fibrosis Canada, based in Toronto, is one of the three main advocacy groups committed to finding a cure for CF and serving Canadians living with the disease. Since 1960, it has invested more than $244 million in research, care and advocacy.
As a result, Canadians have one of the highest CF survival rates worldwide. Possible factors include Canada’s health insurance system and its policies regarding transplants and nutrition may play a role in this.
In fact, a study led by Anne Stephenson of St. Michael’s Hospita, showed that Canadians with CF live on average 50.9 years — just over 10 years longer than Americans with the disease. Stephenson looked at data from the U.S. Cystic Fibrosis Foundation Registry covering 45,456 patients and from the Canadian Cystic Fibrosis Registry, covering 5,941 patients, between 1990 and 2013.
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