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  • Canadian Association of Pompe motto

    Created: Wednesday, September 23, 2009 10:55 AM Author: Tyler Reilly
    The Canadian Association of Pompe was setup to help persons in Canada and elsewhere become familiar with Pompe disease, also for support of those persons with Pompe...

  • Province to fund teen's treatment

    Created: Tuesday, September 22, 2009 09:29 PM Author: Tyler Reilly
    Province to fund teen's treatment 'Michelle Lang and Renata D'Aliesio, Calgary HeraldPublished: Tuesday, May 13, 2008It's like a dream come true,' says Innisfail momAlberta's decision to pick up the tab for an expensive therapy to treat an Innisfail tee...

  • Life-saving Mother's Day gift

    Created: Tuesday, September 22, 2009 09:26 PM Author: Tyler Reilly
    Life-saving Mother's Day gift CTV Edmonton   Linda Pare found out her son's $500,000 a year medicine would now be covered.Life-saving Mother's Day giftSonia Sunger, Updated: Sun May. 11 2008 22:02:48ctvedmonton.caAn Innisfail woman had her prayers an...

  • The Chronicalherald.ca

    Created: Tuesday, September 22, 2009 07:33 PM Author: Tyler Reilly
    the chronical herald.caFabry sufferers, others with rare conditions mark international Rare Disease Day today Feb. 29 is a rare day on the calendar — a fitting choice for the first international Rare Disease Day.Members of the Fabry Disease Society o...

  • Rare diseases focus of awareness on Feb. 29

    Created: Tuesday, September 22, 2009 07:26 PM Author: Tyler Reilly
    Rare diseases focus of awareness on feb 29February 28, 2008 Rare diseases focus of awareness on Feb. 29www.canoe.caBy LINDSAY O’REILLY, Sun MediaTrevor Pare will graduate from high school this spring but is not sure if he’ll be heading to universi...

  • Guys response to the Globe and Mail article

    Created: Tuesday, September 22, 2009 07:03 PM Author: Administrator
    Guys response to the Globe and Mail article Hi,Here is my response to the Globe and Mail article.Please send me your comments ASAP. I would like to get this out today.I agree that we do not want the courts to decide what should be covered in our (On...

  • FDA approves Genzyme's Myozyme for all patients with Pompe Disease .

    Created: Thursday, August 06, 2009 09:37 AM Author: Administrator
       Trevor Pare, 16, suffers from a rare form of muscular dystrophy. He and his mother, Linda, worry his condition willworsen if the province doesn't pay for a drug that costs up to $400,000 a year.Genzyme Canada put Myozyme on the market Thursday af...
 

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