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Canadian Association of Pompe
November 2016 edition of CAP News.
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Noah's Bear!

Meet Flash, the eighth Limited Edition Collectible Starlight Bear for 2016, designed with the help of 7 year old Noah. Flash was inspired by Noah's love of the colour orange. The rainbow bow tie reflects his happy disposition and represents his love for looking dapper wherever he goes. Noah was diagnosed with Pompe disease in 2011 when he was only 2. Like many of the children that are affected by Pompe disease, Noah has an enlarged heart.

All proceeds go to Starlight Foundation Canada.

...read more

Nova Scotia

Nova Scotia Treats Their First Pompe Patients

We would like to congratulate Nova Scotia for the expeditious review that has led to treatment of the first Pompe patient(s) in NS.

New Zealand

New Zealand Approves Treatment for Infantile Pompe Patients

On November 11, 2016, Pharmac announced reimbursement for three conditions, one of which is infantile Pompe disease. This is a milestone decision as they have denied coverage for any Pompe patients until now.

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Pompe Disease Treatment - We Are Not Finished Yet

An interview with Priya Kishnani, MD, PhD of Duke University Medical Center

...read more on RareDR

Sanofi Genzyme Begins Pivotal Phase 3 Trial of NeoGAA

The first patient has been enrolled and received an infusion in a Phase 3 clinical trial named COMET for the investigational therapy neoGAA. NeoGAA is a second-generation enzyme replacement therapy being studied for the treatment of Pompe disease.

...read more

SickKids VS Undeniable

If you haven't seen this video yet, just do it.

About Pompe

Pompe Disease is a neuromuscular disorder that causes muscle weakness in persons of any age. It affects everyone differently but, in general, causes progressive muscle weakness, especially of the proximal muscles. This is why the patient's breathing is often affected. Patients that are affected as infants can also have organ involvement. Early diagnosis is critical.

...read more

 

About the Canadian Association of Pompe

The Canadian Association of Pompe was established to help persons in Canada, and elsewhere, become familiar with Pompe disease, and to support persons with Pompe disease.

...www.pompecanada.com

 
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