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Canadian Association of Pompe
June 2014 edition of CAP News.
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Walk for Muscular Dystrophy

We're very excited that Team Pompe (that's us!) will be walking with Annette Sebey at the Walk for Muscular Dystrophy in Fredericton, NB on June 22, 2014.

Please
give generously. Let's make muscles move!

For those that aren't aware, Pompe disease is one of many muscle-related disorders that fall under the umbrella of Muscular Dystrophy Canada.

2014 CAP Meeting

We're pleased to be coming to Fredericton, New Brunswick or our annual meeting, June 21-22, 2014.

Finally, we've released the agenda!

Contact Brad at brad@pompecanada.com for more info.

Caring for Rare Disease Caregivers

We often forget how hard it is on those wonderful people that spend hours and hours caring for someone that means so much to them.

We need to think of them as much as we do ourselves. They need care too!

...more info

Caring for Rare Study

The Center of Genomics and Policy (U. McGill, Montreal) has expanded recruitment for the study: "Preferences and the Value of Whole-Exome Sequencing as a Diagnostic Tool for Rare Diseases." They have now added Toronto.

This is part of the CARE for RARE project, a pan-Canadian project promoting the use of a new genetic technology for diagnosing rare disease.

...more info

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.

...more info

 

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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