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• Rare Disease Day

  Created: Wednesday, February 10, 2010 09:08 PM Author: Administrator

  Rare Disease Day is an annual, awareness-raising event coordinated by EURORDIS at the international level and National Alliances of Patient Organisations at the national level. Rare Disease Day is observed on the last day of February....

• Brad's fight against Pompe Disease - a silent killer

  Created: Wednesday, February 10, 2010 11:03 AM Author: John Crittenden

  This is my second letter to you and the reason is that I want to clearly identify the life and death situation my son faces so that I know that you know the seriousness of this....

• Evening News Expensive treatment

  Created: Thursday, January 28, 2010 01:16 AM Author: Tyler Reilly

  An Okanagan man is fighting for medical coverage for a disease so rare he says only one other person in B.C. has it. www.chbcnews.ca...

• National CBC News

  Created: Saturday, January 23, 2010 04:20 PM Author: Tyler Reilly

  Here is the link:http://www.cbc.ca/thenational/watch/The first Acknowledgement is 12min. in the main link is 14min. into prodcast...

• Genzyme chief expects to increase Mass. workforce by at least 500

  Created: Friday, January 22, 2010 12:13 PM Author: Robert Weisman, Globe Staff

  Genzyme chief expects to increase Mass. workforce by at least 500 Genzyme Corp., which is working to end rationing of two key drugs and return to full-scale production by midyear at its troubled Allston Landing plant, expects to hire more than 500 worker...

• Mac research chair aids push for neuromuscular breakthroughs

  Created: Thursday, January 21, 2010 12:00 AM Author: Joanna Frketich The Hamilton Spectator

  A Hamilton doctor looking for the fountain of youth will spend more time in his lab after getting $2 million in research funding. Dr. Mark Tarnopolsky's work on how muscles function also holds hope of finding new treatments for neuromuscular and neurom...

• 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...

• Trevor Pare Update

  Created: Tuesday, April 15, 2008 04:00 PM 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

  Created: Wednesday, April 09, 2008 04:00 PM 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

  Created: Sunday, March 30, 2008 04:00 PM 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

  Created: Monday, March 17, 2008 04:00 PM 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.

  Created: Thursday, February 28, 2008 04:00 PM 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

  Created: Thursday, February 28, 2008 04:00 PM 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

  Created: Wednesday, December 12, 2007 04:00 PM 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...