Jun 22, 2016 | NEWS
The IPA Board was provided with the following statement regarding Biomarin’s BMN-701 study. If you have any questions or concerns please contact the IPA at . If and when more information is available the IPA will inform you as soon as possible. BioMarin greatly...
Jun 15, 2016 | NEWS
Please visit the IPA website to view the statement: http://worldpompe.org/index.php/news/590-ipa-statement-on-biomarin-s-june-9th-announcement-it-will-seek-to-out-license-bmn-701
Apr 30, 2016 | NEWS
UPDATE: DVD recordings of the Conference are available for purchase through the AMDA. The recordings include all presentations and Question and Answer Sessions from the Conference, and can be purchased for $60 (shipping within the US included). To order your DVD set,...
Apr 15, 2016 | NEWS
In recognition of the third annual International Pompe Day, and the 10 Year Anniversary of the approval of MyozymeA form of enzyme replacement therapy used to treat Pompe disease by providing a lab-made version of ... More, Genzyme developed a video highlighting how...
Apr 15, 2016 | NEWS
On the third annual International Pompe Day, the Pompe Community turned its attention to the importance of Early Diagnosis. For Immediate Release April 15, 2016 will be the Third Annual International Pompe Day. The International Pompe Association (IPA), with the...
Apr 11, 2016 | NEWS
In 2014, the Pompe Registry recognized and celebrated an important milestone: the 10-year anniversary of the Registry. Started in 2004 and sponsored by Genzyme, a Sanofi company, the Pompe Registry was established as a global, voluntary, observational database to...
Mar 3, 2016 | NEWS
Results support beginning pivotal Phase 3 clinical trialA research study that tests new treatments or approaches in people. More in Q2 2016 PARIS—(BUSINESS WIRE)—Sanofi and its specialty care global business unit Sanofi Genzyme today presented data from NEO1, its...
Feb 5, 2016 | NEWS
The AMDA is excited to announce that “Inspired by Pompe—High Protein, Reduced Carb Cooking” Cookbooks are availble for sale. This cookbook was written by fellow Pompe patient Sharon Krueger, and all proceeds will go towards the AMDA. Click here to view the Preface and...
Jan 11, 2016 | NEWS
Reveglucosidase Alfa Trends Positive in Respiratory Muscle Strength and Endurance Endpoints in Patients Previously Treated With EnzymeA protein that helps the body carry out chemical reactions. More Replacement Therapy SAN RAFAEL, Calif., Jan. 11, 2016 (GLOBE...
Jan 7, 2016 | NEWS
The AMDA is excited to announce that the 2016 PCMA of Texas Pull for Pompe will take place on Saturday, April 16 at the National Shooting Complex in San Antonio, Texas! This is the 6th Annual Pull for Pompe hosted by the PCMA of Texas. Since it’s launch in 2011, over...
