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Canadian Association of Pompe
October 2014 edition of CAP News.
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First Treatment for Pompe in New Brunswick

October 1, 2014 is a day that Annette Sebey and her family will remember for a very long time. After many years (yes years) of fighting to have the treatment reimbursed, Annette has had her first infusion in her home province of New Brunswick!

You may have followed Annette in the news as she, her family, and supporters from across Canada have worked tirelessly to see this day. Congratulations Annette. Your efforts have helped patients that you will probably never even meet.

...more info

New Brunswick Announces Plan to Treat Patients

New Brunswick has partnered with Ontario to establish the New Brunswick Drugs for Rare Diseases Plan which will provide assistance to those with certain rare diseases who face high drug costs. The plan addresses needs of patients with five rare diseases, including Pompe.

...more info

2014 PAL Awards

Congratulations to the 9 recipients of the Patient Advocacy Leadership (PAL) Awards from around the world.

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Newborn Screening

CAP Supports Newborn Screening for Pompe

At its annual meeting in Fredericton in June, after careful consideration, members of CAP voted overwhelmingly to support newborn screening for Pompe disease. A letter of support from CAP President Brad Crittenden can be found on our website.

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2014 CAP Meeting in Fredericton, NB

Well more than half of the Pompe patients in Canada gathered in Fredericton in June at what proved to be the largest gathering of Pompe patients ever in this country.

We were welcomed by the friendly people of New Brunswick and were excited to participate in the Fredericton Walk for Muscular Dystrophy, where we were pleased to donate over $4500.

Thank you Fredericton!

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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