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About Pompe Disease
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Patient-Focused Publications
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Karen
On the 3rd March 1996 our little girl was born. Karen was bottle fed. She was a greedy...
Author:
Dirk & Hilde (Karen's Parents)
Testimonials
March 22, 2008
Karl-Heinz
1950: Year of birth 1970: Large deviations were found in my liver values in a medical checkup. After...
Author:
Karl-Heinz
Testimonials
March 22, 2008
Wilma
When I was asked if I could write about what it means to live with Pompe Disease –...
Author:
Wilma
Testimonials
March 22, 2008
Lisa Louden
At 16 months, Nicole Collicoat (born 2nd March 2004) has exceeded her life expectancy. She has Pompe’s disease....
Author:
Lisa Louden
Testimonials
March 22, 2008
Malcolm
I noticed the first abnormality at the age of 36. Had I not been medically qualified, I doubt...
Author:
Malcolm
Testimonials
March 22, 2008
Anouk (Clinical Trial Story)
Our daughter, Anouk, was born six years ago with Pompe’s disease, a serious muscle/metabolic illness. It was estimated...
Author:
Anouk's Parents
Testimonials
March 16, 2008
Bartjan (Clinical Trial Story)
Our son BartJan was 6 weeks old (born 14-10-1998) when we heard the diagnoses “Pompe´s disease”. The doctor...
Author:
BartJan's Parents
Testimonials
March 16, 2008
Sari (Clinical Trial Story)
We are the parents of Sari, a Belgian girl of 4,5 years old suffering from infantile Pompe´s disease....
Author:
Sari's Parents
Testimonials
March 16, 2008
Tiffany (Clinical Trial Story)
Tiffany was accepted into the first juvenile clinical trials with enzyme replacement therapy (transgenic ERT) in the Netherlands...
Author:
Marylyn House
Testimonials
March 16, 2008
Ricardo
My name is Ricardo, I am 36 years old, and I live in Buenos Aires, Argentina. At 16...
Author:
Ricardo
Testimonials
March 12, 2008
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