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• Canadian Association of Pompe motto

  motto - motto

  Created: Wednesday, 23 September 2009 18:55 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

  articles - getting myozme paid for

  Created: Wednesday, 23 September 2009 05:29 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

  articles - getting myozme paid for

  Created: Wednesday, 23 September 2009 05:26 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

  articles - getting myozme paid for

  Created: Wednesday, 23 September 2009 03:33 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

  articles - getting Myozyme doubled

  Created: Wednesday, 23 September 2009 03:26 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

  articles - getting myozyme

  Created: Wednesday, 23 September 2009 03:03 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 .

  articles - getting myozyme

  Created: Thursday, 06 August 2009 17:37 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...

• Trevor Pare Update

  articles - getting myozyme

  Created: Wednesday, 16 April 2008 00:00 Author: Enlightened Savage

  Trevor Pare Update Nation, the case of young Trevor Pare made page 3 of the Calgary Sun today. Depending on the printing you got, it may have been on the front page as well.We first talked about Trevor on March the 18th. It's been almost 3 weeks, and h...

• Quick Note to a (formerly) Un-Named Alberta Minister

  articles - getting myozme paid for

  Created: Thursday, 10 April 2008 00:00 Author: The Enlightened Savage

  Quick Note to a (formerly) Un-Named Alberta MinisterQuick Note to a (formerly) Un-Named Alberta MinisterThe Enlightened Savage Thursday, April 10, 2008   Minister Liepert:I know you didn't take the steps which you did today for "public relations" reas...

• Teen fears he may die without test drug

  articles - getting Myozyme doubled

  Created: Monday, 31 March 2008 00:00 Author: Tyler Reilly

  Teen fears he may die without test drugThe Canadian PressMarch 31, 2008INNISFAIL, ALTA. -- An Alberta teenager fears he could die within six months if he cannot get an experimental drug for an extremely rare disease.Seventeen-year-old Trevor Pare suffe...

• Known Killer Holds 4 Albertans Hostage - No Response From Gov't

  articles - getting myozme paid for

  Created: Tuesday, 18 March 2008 00:00 Author: The Enlightened Savage

  The Enlightened Savage An attempt to make sense of politics and political happenings in Calgary, Alberta, Canada, and North America.Tuesday, March 18, 2008Known Killer Holds 4 Albertans Hostage - No Response From Gov't Nation, there is a killer out the...

• Trevor Paré, an Innisfail teen, is one of only a handful of Canadians with Pompe Disease, meaning he was born without the enzyme that metabolizes glycogen (starch) in cells.

  articles - getting Myozyme doubled

  Created: Friday, 29 February 2008 00:00 Author: Tyler Reilly

  reddeeradvocate.compart of Albertalocalnews.com Costly drug crucial for teenBy Ashley Joannou - Red Deer Advocate - February 29, 2008  Trevor Paré, an Innisfail teen, is one of only a handful of Canadians with Pompe Disease, meaning he was born witho...

• Alberta teen pleads for $500,000 Drug Therapy

  articles - getting myozyme

  Created: Friday, 29 February 2008 00:00 Author: Tyler Reilly

  Alberta teen pleads for $500,000 Drug Therapy 17-year-old asking government for equal treatment for rare diseasesLast Updated: Friday, February 29, 2008 | 6:48 AM MTCBC NewsAn Alberta teenager who suffers from a rare muscular disorder says he will die w...

• Genzyme Study of Myozyme® for Late-Onset Pompe Patients Meets Co-Primary Efficacy Endpoints

  articles - getting myozyme

  Created: Thursday, 13 December 2007 00:00 Author: Tyler Reilly

  Genzyme Study of Myozyme® for Late-Onset Pompe Patients Meets Co-Primary Efficacy EndpointsDate: December 13, 2007Genzyme Corp. (Nasdaq: GENZ) announced today that its Late Onset Treatment Study (LOTS) of Myozyme® (alglucosidase alfa) met its co-prim...

• Company develops drug treatments for rare diseases

  articles - getting myozyme

  Created: Friday, 27 July 2007 00:00 Author: Tyler Reilly

  White House honours GengzymeCompany develops drug treatments for rare diseases 8 The Mississauga News -Friday, July 27, 2007 Genzyme Canada is being honored today at the White House for helping to improve the health of people with rare diseases.U.S. ...

• Lisgar resident helps open door to new drug

  articles - getting myozyme

  Created: Wednesday, 28 February 2007 00:00 Author: John Stewart

  Lisgar resident helps open door to new drugMississauga News Wednesday February 28 2007 Health Lisgar resident helps open door to new drug By John Stewartstaff For years, Guy Ashford-Smith wondered what was wrong with him because he seemed to catch pn...