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
February 26, 2012
2012 PCMA Pull for Pompe Fundraiser
PCMA of Texas invites you to enjoy a day of family fun benefiting Acid Maltase Deficiency, also known as Pompe
January 24, 2012
NMR Imaging And Spectroscopic Techniques For Diagnosis, Follow Up And Evaluation Of Pompe Disease
Webinar Details Title: NMR Imaging (MRI) and spectroscopic (NMRS) techniques for diagnosis, follow up and evaluation of 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. Date:
January 17, 2012
Announcement Regarding 160 liter Myozyme Supply
As some of you are probably aware, Genzyme has announced that, due to production and supply constraints, starting March 30,
2020AOn October 7-9, 2011, 150 Pompe patients and their families, scientists, doctors, and industry representatives from around the world gathered