SO31 on International Rare Disease Day
Mr. Speaker, some 2.7 million Canadians are affected by 1 in 6,000 rare disorders, such as cystic fibrosis, sickle cell disease and thalassemia. Most rare disorders are difficult to diagnose and are chronic, degenerative, progressive and life-threatening.
Families who face rare disorders lack access to scientific knowledge of their disease and quality health care. They face difficulties and inequities in accessing treatment and care.
Sadly, Canada is one of the only developed countries without a policy for rare disorders. As a result, Canadian patients are frequently excluded from many clinical trials and often have delayed access to treatment. Moreover, Canadian patients cannot always access drugs available to patients elsewhere. Only a fraction of the drugs approved in Europe and the U.S. are brought to Canada.
On International Rare Disease Day, let us all commit to working together to develop a national policy for rare disorders.