Pompe Community Loses Valued Advocate

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...

News 2012 AMDA/Genzyme Patient Diagnosis Survey Results

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...

News Dr. Arnold Reuser Decorated by Queen of Netherlands

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...

2012 AMDA Research Grant

Jul 30, 2012 | NEWS

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 tha... More research. This grant opportunity was made possible...

2012 PCMA Pull for Pompe Fundraiser Results

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 DiseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup...

BioMarin Pompe Program Update

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...

News 2011 AMDA/IPA Conference DVDs available!

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...