November 30, 2012
Pompe Community Loses Valued Advocate
On the 30th November 2012, Helen Walker OAM (Member of the Order of Australia) passed away. Helen was a board
October 29, 2012
News 2012 AMDA/Genzyme Patient Diagnosis Survey Results
The path to diagnosis can be long and complicated and patients are frequently misdiagnosed along the way. In an effort
September 4, 2012
News Dr. Arnold Reuser Decorated by Queen of Netherlands
On Thursday, August 30, 2012 Dr. Arnold Reuser was decorated as a Knight in the Order of the Netherlands Lion
July 30, 2012
2012 AMDA Research Grant
The AMDA is excited to announce a research grant opportunity for applicants who are involved in Pompe DiseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup that damages muscles and can affect breathing and, in some cases, the heart. research. This
July 25, 2012
2012 PCMA Pull for Pompe Fundraiser Results
I am very excited to announce that the 2012 PCMA’s Pull for Pompe was a HUGE success. The PCMA of
May 14, 2012
BioMarin Pompe Program Update
May 13, 2012—Program Update from BioMarin. For more information about the BioMarin trials please contact Sean McCarthy of BioMarin at:
April 9, 2012
News 2011 AMDA/IPA Conference DVDs available!
Order your 2011 AMDA/IPA Conference DVD Today! This set of DVDs includes all of the presentations and Question and Answer
March 19, 2012 Community Update for Pompe Families in the United States who Utilize Myozyme® (alglucosidase alfaA form of enzyme replacement therapy used to treat Pompe disease by providing a lab-made version of the GAA enzyme.) Produced at the
March 7, 2012
Needle Core Muscle Biopsy
Webinar Details Title: Needle Core Muscle Biopsy Date: Wednesday, March 7, 2012 Speaker:Mark Tarnopolsky, MD, PhD, FRCP (C) Webinar Overview:Traditionally