Newsmaker Breakfast - The CDR and Rare Diseases

Monday April 23 2007 to Monday April 23 2007
Hosting Organizations: CORD (Canadian Organization for Rare Disorders)
Contact: Steve Lott
Website: http://www.raredisorders.ca

Durhane Wong-Rieger, President of the Canadian Organization for Rare Disorders (CORD), will challenge the Canadian government to respond to charges made by patients and families with rare disorders that they are being unjustly denied potentially life-saving medicines. They feel that our national drug review agency – the Common Drug Review (CDR) – is applying an inappropriate, inadequate and unethical health economic assessment to orphan drugs, resulting in the denial of nearly every orphan drug presented to the CDR.

The Standing Committee on Health is evaluating the CDR and will hear testimony on April 25th from the Federal, Provincial and Territorial governments that fund and operate the CDR. “We felt it was essential that Committee members have in mind the concerns of the patients as they listen to the government managers of CDR,” says Wong-Rieger.

WHAT:	NEWSMAKER BREAKFAST: THE CDR AND RARE DISEASES Hosted by Durhane Wong-Rieger, President of CORD Ms. Wong-Rieger will discuss the shortcomings of CDR assessment of drugs for rare disorders and the need for an alternative solution. The issues will be exemplified by Tony Clark, a patient diagnosed with Renal Cell Carcinoma – a rare and terminal disorder – who will share his story.
WHEN:	April 24, 2007 7:30 - 8:00am – media registration 8:00am - breakfast is served 8:15 - 8:45am - keynote address 8:45am - Q&A and interview opportunities
WHERE:	The National Press Club of Canada 150 Wellington, Ottawa, ON KIP 5A4 South Entrance: 165 rue Sparks Street
WHO:	Durhane Wong-Rieger, President of CORD Tony Clark, Kidney cancer patient Deborah Maskens, cancer patient
MEDIA:	One-on-one interviews with participants B-roll will be made available
RSVP:	Please confirm attendance with the National Press Club at 613-233-5641 or with Steven Lott (contact information below).

For more information, please contact:
Steven Lott
Communications Director, Ward Health Strategies
(905) 905-577-6200 ext. 424; 905-928-5688 (cell)
slott@wardhealth.com

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