Media Invitation - Setting the record straight about treating rare diseases

Real facts. Real patients.

TORONTO, May 1, 2014 /CNW/ - On Friday, May 2, the Canadian Organization for Rare Disorders (CORD) is inviting the media for a preview of the Framework for a Canadian Strategy for Rare Diseases, as well as to set the record straight about funding for drugs for diseases. Why do drugs for rare diseases cost so much? What is the healthcare budget impact of treating patients with orphan drugs? Is it worth it? How does Canada compare with other countries?

The media plays a very important role in raising awareness about rare diseases and the need for publicly funded access to treatment. Whether it's a call for a bone marrow donor or a plea to the government to provide drug funding, sometimes the story is right but the facts are not.

Please join CORD president, Durhane Wong-Rieger, as she discusses:

  • How good is the current level of care for Canadians with rare diseases? What is working? What is not? Does Canada really lag behind Romania and Poland?
  • Of the 7,000 rare diseases, how many have a drug treatment? What are the barriers to access, even for drugs that are inexpensive and already in use for another condition?
  • Canada's Orphan Drug Regulatory Framework will significantly improve availability of new drugs for rare diseases. Why are the provincial drug plans worried, and why is there no cause for worry?
  • How much does it really cost to treat rare diseases and what is the likely future impact?

Several GTA patients living with life-threatening rare diseases will be available for interview and to share their real stories of how access to treatment has positively benefited – and even saved – their lives.

Media who attend this special briefing are invited to stay for the remainder of the day's sessions.


Durhane Wong-Rieger, president, CORD

Michael Eygenraam, living with atypical Hemolytic Uremic Syndrome(aHUS)

A clinician specializing in rare diseases


Courtyard Marriott Downtown Toronto

475 Yonge Street

University Room A & B


Friday, May 2, 2014        

8:30 – 9:30 a.m.

SOURCE: Canadian Organization for Rare Disorders

For further information: or to book an interview, please contact: Jennifer Dolan | Cohn & Wolfe,, 647-259-3292; Beth Daniher | Cohn & Wolfe,, 647-259-3279

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