Nov 30, 2012 | NEWS
On the 30th November 2012, Helen Walker OAM (Member of the Order of Australia) passed away. Helen was a board member of the International Pompe Association (IPA) and President of the Australian Pompe’s Association. Helen passed away at the age of 72 after having...
Oct 29, 2012 | NEWS
The path to diagnosis can be long and complicated and patients are frequently misdiagnosed along the way. In an effort to improve diagnostic accuracy, the AMDA and Genzyme collaborated on a questionnaire project in the first-quarter of 2012. The goal of the...
Sep 4, 2012 | NEWS
On Thursday, August 30, 2012 Dr. Arnold Reuser was decorated as a Knight in the Order of the Netherlands Lion by decree of Queen Beatrix of the Netherlands. The decoration was presented at the conclusion of the “Passion for Pompe” Program at the Arminius Church in...
Jul 30, 2012 | NEWS
The AMDA is excited to announce a research grant opportunity for applicants who are involved in Pompe Disease research. This grant opportunity was made possible by a fundraiser hosted by the Precast Manufacturer’s Association of Texas (PCMA of Texas) aimed at...
Jul 25, 2012 | NEWS
I am very excited to announce that the 2012 PCMA’s Pull for Pompe was a HUGE success. The PCMA of Texas (www.pcmatexas.org) raised almost $90,000.00 for Pompe Disease Research through its annual skeet-shooting fundraiser! Please click here for PCMA of Texas’s...
May 14, 2012 | NEWS
May 13, 2012—Program Update from BioMarin. For more information about the BioMarin trials please contact Sean McCarthy of BioMarin at: smccarthy@bmrn.com. The AMDA is also available to help answer any questions or concerns. Please contact Tiffany House or Marsha...
Apr 9, 2012 | NEWS
Order your 2011 AMDA/IPA Conference DVD Today! This set of DVDs includes all of the presentations and Question and Answer Sessions on October 8-9th, 2011. To order your DVDs, please send an email with your mailing address and the number of copies you would like to...
Mar 20, 2012 | NEWS
March 19, 2012 Community Update for Pompe Families in the United States who Utilize Myozyme® (alglucosidase alfa) Produced at the 160 L Manufacturing Scale Download complete article
Feb 26, 2012 | NEWS
PCMA of Texas invites you to enjoy a day of family fun benefiting Acid Maltase Deficiency, also known as Pompe Disease. This event is designed for all ages and ability levels. The 2012 Pull for Pompe will take place on Saturday, April 21, 2012 at the National...
Jan 17, 2012 | NEWS
As some of you are probably aware, Genzyme has announced that, due to production and supply constraints, starting March 30, 2012 the 160 liter Myozyme (which is ONLY used in the United States) will no longer be shipped to patients over the age of 12 months. This ONLY...
