TOP NEWS
Tiffany Laurel House (1983-2025): A Life of Purpose and Passion
Tiffany Laurel House January 22, 1983 - May 25, 2025 Tiffany L. House, 42, of San Antonio, Texas, passed away on May 25, 2025, after a courageous battle with Pompe disease, a rare and progressive muscle disease. One of the first and most severe symptoms she...
OTHER NEWS
Sanofi Genzyme Begins Pivotal Phase 3 Trial of NeoGAA Investigational Second-Generation Therapy
Sanofi Genzyme Begins Pivotal Phase 3 Trial of NeoGAA Investigational Second-Generation Therapy for Pompe Disease Cambridge, Mass. – November 4, 2016 - Sanofi Genzyme, the specialty care global business unit of Sanofi, announced today that the first patient has been...
2016 Helen Walker Research Grant For Pompe Disease Now Accepting Applications
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 the 2016 Pull for Pompe, a private fundraiser held by the Precast Manufacturer’s Association of Texas...
The History of PCMA of Texas’s Pull for Pompe! Thank you!
BioMarin Update for the Pompe Community Regarding BMN 701
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...
IPA Statement on Biomarin’s June 9th announcement it will seek to out-license BMN-701
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
UPDATE: 2015 AMDA International Pompe Patient and Scientific Conference – Summary Report
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,...
Celebrating the Pompe Community
In recognition of the third annual International Pompe Day, and the 10 Year Anniversary of the approval of Myozyme, Genzyme developed a video highlighting how far the Pompe community has come in the last 10 years, and our hopes for the future. Please find the video...
Press Release: International Pompe Day 2016
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...
Pompe Registry – A Decade of Making a Difference
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...
Sanofi Genzyme Presents Results from Phase 1/2 Study of Investigational Second-Generation Therapy
Results support beginning pivotal Phase 3 clinical trial in Q2 2016 PARIS—(BUSINESS WIRE)—Sanofi and its specialty care global business unit Sanofi Genzyme today presented data from NEO1, its Phase 1/2 clinical study evaluating the investigational novel enzyme...
Acid Maltase Deficiency Association
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