Mr. Speaker, I would like to welcome representatives from the Pulmonary Hypertension Association of Canada, PHA, and the Canadian Organization for Rare Disorders, CORD, to Ottawa today in recognition of PH Awareness Month.
Pulmonary hypertension is a condition of high blood pressure in the lungs and affects up to 5,000 Canadians, men and women of all ages and ethnicities. There is currently no cure for pulmonary hypertension and untreated, PH will claim the lives of 50% of patients within the first two years after diagnosis. One in ten Canadians will be diagnosed with a rare disorder like pulmonary hypertension and there are approximately 5,000 such disorders in Canada.
CORD is urging Canada to adopt a formal definition of rare disorder or disease and to create a Canadian orphan drug policy to respond to persons with rare disorders.
My grandson, Dylan Hunter Bell, was diagnosed with PH at age two and passed away July 14 this year, the day after his 12th birthday.
As a father and as a grandfather, I invite all Canadians to join in the fight to raise awareness of PH and rare disorders.