Media Alert - Ottawa Panelists to Discuss Rare Disease Strategy to Support 3 Million Canadians

OTTAWA, Nov. 5, 2015 /CNW/ - The Canadian Organization for Rare Disorders (CORD) will visit Ottawa, November 9, to discuss the urgent need to implement Canada's Rare Disease Strategy.  This Ottawa panel, with local perspectives, is one of a series of Economic Club of Canada luncheons to heighten attention to 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 join it in implementing Canada's Rare Disease Strategy to give the same hope and treatment to patients with rare diseases as provided to Canadians with common conditions and other patients with rare diseases around the world.  Follow the panel discussion on Twitter: #Canada4Rare



Durhane Wong-Rieger, President & CEO, CORD

Dr. Alex MacKenzie, Principal Investigator, Children's Hospital of Eastern Ontario Research Institute & Professor, Faculty of Medicine, University of Ottawa

Jonathan Pitre (and mother Tina Boileau), Ottawa rare disease patient (known as "Butterfly Child" with Epidermolysis bullosa)

Sean Thompson, CEO, Ramsey Lake Pharma Corp.

Moderator:  Mr. Fred Horne, Former Minister of Health, Alberta


Panel discussion: "A Rare Disease Strategy for All Canadians"


Monday, November 9, 2015

11:30 a.m.

Guest/media registration begins

12:15 p.m.

Panel discussion 

1:30 p.m.

Event concludes


Fairmont Chateau Laurier, Drawing Room

1 Rideau Street, Ottawa, Ontario

SOURCE The Economic Club of Canada

For further information: To confirm attendance or for more information about the event, please contact: Emily Whelan, Economic Club of Canada, Cell: 613-314-7171,


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