CORD Conference and Day of Action in Ottawa a capital success

Posted: May 6, 2009

Bill Laughlin, Aplastic Anemia and Myelo-dysplasia Association of Canada, Virginia Butler, Wegener's Granulo-matosis Support Group of Canada and Jim Mundy, Alpha-1 Canada

On April 30th, the Canadian Organization for Rare Disorders (CORD) held a Day of Action on Parliament Hill in advance of their annual conference on May 1st and 2nd.

Dr. Ken Chapman and Dr. Diane Cox who both spoke at the conference, as well, Ana Bradi from the Canadian Alpha-1 Research Registry and Alpha-1 Canada’s Executive Director, Jim Mundy represented the Alpha-1 Community.

On the Day of Action ten teams of three to four representatives of rare disorder groups fanned out across Parliament Hill to prearranged meetings with MPs and government officials. Although there are many issues of interest to the rare disease community, the teams focused their persuasive powers on gaining support for a Canadian Orphan Drug Policy including a definition of 1 in 2,000 Canadians as rare; support for research into discovering new treatments; and strengthening Canada’s leadership in health care.

While the Day of Action did not result in any promises for concrete action, it did increase awareness among politicians of the issues facing the rare disease community and commitments for small steps toward our ultimate goals.

The conference which followed the Day of Action, featured well known and thoughtful physicians, patients, researchers, lawyers and caregivers who shared their views on and experiences with rare disorders. There were three sessions on Alpha-1.