Mr. Speaker, tomorrow, February 29, is the first International Rare Disease Day and today is CORD's, the Canadian Organization for Rare Diseases, Day of Action on the Hill.
Rare disorders include such conditions as cystic fibrosis, muscular dystrophy, thalassemia, MPS, pulmonary hypertension, Fabry disease and kidney cancer.
Canada is one of the only developed countries in the world that does not have a definition of a rare disorder or an orphan drug policy. A Canadian rare disorder policy is urgently needed as accessing medications to treat rare disorders is extremely difficult and there are currently significant systemic barriers for patients and families.
Members of CORD, family members and friends are in Ottawa today to ask Parliament to accept CORD's “Chance for Life” fund and other proposals.
Over 7,000 rare disorders have been identified so far and affect approximately 10% of Canadians.
I have submitted private member's Motion No. 426 to support CORD and Canadians with rare disorders and I ask my colleagues to support it.