The Economic Club of Canada

The Economic Club of Canada

January 15, 2016 11:21 ET

Media Alert: Vancouver Panelists Discuss Urgent Need for Rare Disease Strategy for 3 Million Canadians Followed By "#Canada4Rare" Rally

VANCOUVER, BRITISH COLUMBIA--(Marketwired - Jan. 15, 2016) - As federal, provincial and territorial health ministers convene in Vancouver on January 20 and 21, the Canadian Organization for Rare Disorders (CORD) will be hosting a panel session in Vancouver, January 19, to discuss the urgent need to implement Canada's Rare Disease Strategy. The Vancouver panel is one in a series of Economic Club of Canada luncheons to raise awareness on the Strategy.

In Canada, disability and death due to cancer, cardiovascular disease, and diabetes have dropped by 50% and more over the past 20 to 50 years due in large part to world-class national strategies. At the same time, Canadians with rare diseases still struggle to access timely and appropriate care, resulting in unnecessary delays in testing, wrong diagnoses, children with physical and mental developmental challenges, and premature death. Canada lags behind more than 35 other countries that have already put in place national plans for rare diseases.

CORD calls upon all Canadians to support implementing Canada's Rare Disease Strategy to give the equal care and treatment to patients with rare diseases as provided to Canadians with common conditions and other patients with rare diseases around the world. The panel session will be followed by a rare disease rally -- both can be followed on Twitter: #Canada4Rare

WHO: Moderator: Mr. Fred Horne, Former Minister of Health, Alberta
Durhane Wong-Rieger, President & CEO, CORD
Nicklas Harkins, North Vancouver rare disease patient (MPS 1)
Dr. Sylvia Stockler, Clinical Investigator, CFRI, Professor and Head, Division of Biochemical Diseases, Department of Pediatrics, University of British Columbia, Program Director, Biochemical Diseases, BC Children's Hospital
Robin Sherrington, PhD, Senior Vice President Business & Corporate Development, Xenon Pharmaceuticals Inc.
WHAT: Panel discussion: "A Rare Disease Strategy for All Canadians"
WHEN: Tuesday, January 19, 2016
11:30 a.m. Guest/media registration begins
12:15 p.m. Panel discussion
1:30 p.m. Discussion concludes and rare disease rally begins
WHERE: Fairmont Pacific Rim, Emerald Ballroom
1038 Canada Place

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