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Canadian Association of Pompe
December 2016 edition of CAP News.
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Merry Christmas and have a healthy and happy New Year!

Looking for a Christmas gift?

Meet Flash, 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.

You can find Flash at Toys"R"Us

All proceeds go to Starlight Foundation Canada.

...read more

Rare Disease Day 2017

February 28, 2017 marks the tenth international Rare Disease Day coordinated by EURORDIS. Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Rare Disease Day 2015 Official Video

The official video for Rare Disease Day 2017 isn't out yet, but check out the one from 2015.

www.rarediseaseday.org

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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