Canadian Association of Pompe
October 2015 edition of CAP News.
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Meet Lorena!

In our continuing series of patient stories, meet Lorena. This is a small taste of what it's like to be a family affected by rare disease.

After my daughter was born in 1992, my physician discovered that I had extremely high Creatine Kinase (CK), levels. His first instinct was that it was liver disease. Although I had a liver biopsy, nothing was found. Specialists continued to follow me for the next nine years... more

Newborn Screening

CAP Urges Ontario to Include Devastating Neuromuscular Condition in Newborn Screening Program

The Canadian Association of Pompe (CAP) has submitted a nomination for Pompe disease to be considered for addition in Ontario’s newborn screening panel. In recognition of Newborn Screening Awareness Month, CAP urges Newborn Screening Ontario to expand its program to include this rare neuromuscular condition. more

Check Out Our New Website!

It's long past the time that our tired old website needed to be retired. Thankfully, it has been. Come take a look!

2015 CAP Conference and AGM in Montreal

Again, more than half of the Pompe patients in Canada gathered in June for our conference and AGM. Many thanks to our great speakers, to Emma for coming all the way from Pennsylvania, Genzyme for sponsoring the event and to Gail & Yves for keeping us on track.

Thank you Montreal, for being a great host and, yes, also for the poutine!

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.

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