John and Kelvin Dyck may be brothers, but the two men share more than a last name. They also have in common a rare condition called Pompe disease. The genetic disorder affects only about one in 40,000 people, and causes a progressive weakening of heart and skeletal
VANCOUVER, Jan. 19, 2016 /CNW/ – Most of the 2.8 million Canadians with a rare disease experience extraordinary and unnecessary barriers getting the right diagnosis, specialist, and treatment. On the eve of Canada’s Health Ministers’ meeting in Vancouver, the Canadian Organization for Rare Disorders (CORD) and the Economic Club of Canada convened a panel calling for the immediate implementation of Canada’s Rare Disease Strategy.
TORONTO, Oct. 3, 2012 – The Canadian Organization for Rare Disorders, on behalf of the 2.8 million Canadians with rare disorders, welcomes Health Minister Aglukkaq’s announcement of the “first ever Canadian framework to increase access to new treatments and information” and the launch of Orphanet-Canada.