Canadian Organization for Rare Disorders to speak at National Press Club of Canada



    OTTAWA, April 29 /CNW Telbec/ - Durhane Wong-Rieger, President of the
Canadian Organization for Rare Disorders (CORD), challenges the Members of
Parliament to honour the commitment made last May when they passed Motion 426
calling for a national program for rare disorders. She will be joined by
Professor Philippe Crine, professor at the University of Montreal and Chief
Scientific Officer of Enobia, and Ed Koning, president of the Canadian Fabry
Association. They will speak to the lack of government action on promises made
beginning in 2005.
    As the host of a Newsmaker Breakfast organised in collaboration with the
National Press Club of Canada, she will discuss the impact of government
inaction on patients, including delay and denial of life-saving therapies. The
Motion asked the government to consider a special fund for rare disease
treatments, expert criteria for access to life-saving and life-enhancing
therapies, inclusion of Canadian patients in clinical trials, and incentives
for research and development on new therapies..

    
    WHAT:       NEWSMAKER BREAKFAST: Rare Disorders in Canada: "A Promise Not
                Kept"
                Hosted by Durhane Wong-Rieger, President of CORD
                Ms. Wong-Rieger will discuss the consequences of the lack of
                a Canadian national program for rare disorders. The issues
                will be exemplified by Dr. Crine, the discoverer of a drug
                for a very rare bone disorder whose facilities have been
                moved to Boston and Ed Koning, a Fabry patient whose funding
                for life-saving drug therapy is scheduled to expire in
                September.

    WHEN:       April 30, 2009
                7:45 - 9:00am - registration
                7: 45 am - breakfast is served
                8:00 -8:45am - presentations
                8:45am - Q&A and interview opportunities

    WHERE:      Sheraton Hotel
                O'Connor Room
                150 Albert Street, Ottawa, ON

    WHO:        Prof. Philippe Crine, Vice-President, Enobia
                Adrian (Ed) Koning, President, Canadian Fabry Association
                Durhane Wong-Rieger, President, CORD

    Hosted by:  National Press Club of Canada

    MEDIA OPPORTUNITIES:
                - One-on-one interviews with participants

    RSVP:       A reply is appreciated at rsvp@raredisorders.ca or
               (416) 969-7431
    




For further information:

For further information: please visit www.raredisorders.ca or call
Angela Covato, (416) 969-7431

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