In the News

 
 
of 5 (total 44 items)
New Brunswick Announces Rare Disease Plan!
Author : Kirsten Harkins Publish Date : 7/28/2014

Breaking news! The New Brunswick Health Ministry has annouced a Drugs for Rare Diseases Plan - funding will be available for patients with MPS I, MPS II, and 3 other rare diseases. Click here to read the news release: http://www2.gnb.ca/content/gnb/en/news/news_release.2014.07.0939.html

MPS IV A Families in the News!
Author : Kirsten Harkins Publish Date : 7/14/2014

Calgary’s Barb Larson appeared on AM630 CHED’s “Tencer and Grose” show in Edmonton, Alberta on July 9 to talk about her daughter Savannah’s journey with MPS IVA, Health Canada approval of VIMIZIM and the need for publicly funded access to treatment. Listen to the inte...

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Cornwall family's spirit gets a lift
-- Seaway News

Author : By Adam Brazeau Publish Date : 3/15/2014

Melanie Bourdon (MPS IV A) was featured in an article in the March 15, 2014 edition of the Seaway News. Click here to read about how the Shriner's made a huge impact on this young girl's life!

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Canada lags behind on rare disease drugs
-- The Globe and Mail

Author : Carly Weeks Publish Date : 2/27/2014

Click here to read the article.

Vimizim offers hope to those with MPS IV A
-- Several Canadian MPS Society members featured in recent news stories

Publish Date : 1/21/2014

Vimizim in the media Print: Wingham Advance-Times: story featuring Braun family on December 11, 2013 24 Heures Montreal: story featuring Mélissa Bilodeau on December 13, 2013 Grey Bruce This Week: story featuring Braun family on January 2, 2014 Courier Laval: story featuring Mélissa Bi...

National Post Rare Disease Insert Features MPS
Author : Kirsten Harkins Publish Date : 10/21/2013

Rare Diseases were featured in a National Post insert October 19th. Click here to read the insert, which includes several articles of interest, including an article describing the challenges facing one particular patient in New Brunswick, a province that does not fund treatments for patients with MP...

Treatment for Aleena
Author : Various Publish Date : 9/10/2013

Aleena Sadownyk, from St. Albert, Alberta, was diagnosed with MPS VI in early July 2013 and began enzyme replacement therapy in August 2013. Here are exerpts from a few of the many media pieces that told her story: Alberta will help fund critical treatment for young St Albert girl BY SARAH O’D...

Breaking News: Consultation for a Canadian Plan for Rare Diseases Attracts International Expertise
Author : Durhane Wong-Rieger Publish Date : 9/4/2013

Breaking News: Consultation for a Canadian Plan for Rare Diseases Attracts International Expertise The world’s leading “rare disease” advocate, Yann LeCam, President & CEO of EURORDIS (European Organization for Rare Disorders) is coming to Ottawa to lend his expertise to develo...

Little boy, big medical bills, but Ontario plan covers tot's costly enzyme treatment for Hunter syndrome
Author : Galen Eagle, Peterborough Examiner Publish Date : 8/23/2013

Friday, August 23, 2013 12:09:57 EDT AM BUCKHORN - If it wasn’t for the Band-Aid covering the new IV port in his chest, you’d think Jack Higginson was no different than any other three-year-old boy. His life revolves around Thomas the Tank Engine and Lightning McQueen. He giggl...

Ultragenyx Receives Approval of Clinical Trial Application (CTA) for a Phase 1/2 Trial Testing UX003 in Mucopolysaccharidosis Type 7 (MPS VII)
Author : Ultragenyx Pharmaceutical Inc. Publish Date : 8/22/2013

NOVATO, CA – August 14, 2013 – Ultragenyx Pharmaceutical Inc., a biotechnology company, received Clinical Trial Application (CTA) approval from the Medicines and Healthcare Products Regulatory Agency (MHRA) in the U.K. to conduct a Phase 1/2 clinical trial of UX003, recombinant human b-g...

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