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Canadian Association of Pompe
February 2014 edition of CAP News.
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Save the Date!

We're pleased to announce that our annual meeting will be held June 20-23, 2014 in Fredericton, New Brunswick.

Look for us at the Fredericton Walk for Muscular Dystrophy!

Contact Brad at brad@pompecanada.com for more info. Stay tuned for updates.

International Pompe Day

The IPA is excited to announce that the international Pompe community has chosen April 15, 2014 as the first annual International Pompe Day!

CAP is now listed on Orphanet

Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.

Rare Disease Day 2014

February 28, 2014 marks the seventh international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from more than 70 countries and regions worldwide are planning awareness-raising activities around the slogan “Join Together for Better Care”.

What's happening in Canada?

Canadian Organization for Rare Disorders

Care for Rare Study

The Center of Genomics and Policy (U. McGill, Montreal) is recruiting patients for the study: “Preferences and the Value of Whole-Exome Sequencing as a Diagnostic Tool for Rare Diseases.” It is part of the CARE for RARE project, a pan-Canadian project promoting the use of a new genetic technology for diagnosing rare disease.

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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