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Canadian Association of Pompe
May 2013 edition of CAP News.
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Canadian Association of Pompe
Website | About Pompe | Contact us
Welcome to the inaugural edition of CAP News, our online newsletter. We would welcome your feedback at cap@pompecanada.com

Meetings & Events

2013 National CAP Meeting

The 2013 National CAP Meeting is being held June 8-9 in Toronto, ON. If you live in Canada and are affected by Pompe, join us!

...more

Infantile Pompe Meeting

The United Pompe Foundation has partnered with the Pompe Team at Duke to hold their first Infantile Pompe Meeting, Aug. 15-17, for ages up to 13 years. For questions about the meeting contact Katie Sheets (919) 681.1984 or Katie.Sheets@duke.edu

...www.dukechildrens.org

MD Walks

Muscular Dystrophy Canada is holding Walks for MD across Canada. Find one near you and raise awareness for MD. Pompe is one if the disorders that is supported by the efforts of MDC.

...www.walkformusculardystrophy.ca

International GSD Conference

The International GSD Conference is geing held Nov. 28-30, in Heidelberg, Germany. This will bring together muscle and liver types of GSDs for scientists and patients.

...conference2013.worldgsd.org

Interviews

Guy Ashford-Smith was interviewed by Cam Wells, CJAM Radio.

...more

Rare Disease in Canada

Orphan Drug Framework

Last fall, Federal Health Minister Aglukkaq announced the launch of the Orphan Drug Framework and Orphanet-Canada. This should ultimately increase access to new treatments.

...more

First gene therapy trial launched for Fabry disease

Exciting work being done in Calgary. “We hope this will one day become a form of treatment that effectively cures Fabry disease,” says Dr. Aneal Khan, a medical geneticist based at Alberta Children’s Hospital, who is leading the Calgary segment of the national project.

...more

Meet Annette

Annette is one of 40 Canadians that have been diagnosed with Pompe Disease, a rare enzyme deficiency. It is a progressive and often fatal neuromuscular disease.

Living in New Brunswick means that Annette has to leave her family every two weeks to travel to Florida to participate in trials for an experimental treatment. Other patients across Canada have been receiving the only approved treatment for some time. NB has declined to provide this to Annette for years.

...more about Annette

Did You Know?

In Canada, treatment for adults is covered in BC, AB, SK, MB, ON and QC, but not New Brunswick.

International Pompe Day

The first International Pompe Day will be April 15, 2014.

Be Social

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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

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

Copyright © 2013 Canadian Association of Pompe, All rights reserved.
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