TOP NEWS
A Heartfelt Thank You to Our Community
A Heartfelt Thank You to Our Community During this time of profound loss, the outpouring of love, support, and kindness from our community has been truly overwhelming. The passing of our beloved president, Tiffany, has been deeply felt by all of us at the Acid Maltase...
OTHER NEWS
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...
Inspired By Pompe Cookbooks available for Sale!
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...
BioMarin Announces Interim Analysis of INSPIRE Clinical Trial in Pompe Disease
Reveglucosidase Alfa Trends Positive in Respiratory Muscle Strength and Endurance Endpoints in Patients Previously Treated With Enzyme Replacement Therapy SAN RAFAEL, Calif., Jan. 11, 2016 (GLOBE NEWSWIRE)—BioMarin Pharmaceutical Inc. (Nasdaq:BMRN) today announced...
2016 PCMA of Texas Pull for Pompe!
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...
Amicus Therapeutics Commences Phase 1/2 Study of Novel ERT for Treatment of Pompe Disease
CRANBURY, N.J., Dec. 22, 2015 (GLOBE NEWSWIRE)—Amicus Therapeutics (Nasdaq:FOLD), a biopharmaceutical company at the forefront of rare and orphan diseases, today announced that its investigational new drug (IND) application, submitted to U.S. Food and Drug...
2015 Helen Walker Research Grant Awarded
The sixth annual AMDA Research Grant (the 2015 Helen Walker Research Grant) was awarded to Dr. Rosa Puertollano and Dr. Nina Raben for their Project: “Curcumin: Can it promote cellular clearance in Pompe disease?.” The aim of this project is to test the possibility of...
2015 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 a fundraiser hosted by the Precast Manufacturer’s Association of Texas (PCMA of Texas) on April 18,...
Registration now open for 2015 AMDA International Pompe Patient and Scientific Conference
We are excited to announce that Registration is now open for the 2015 AMDA International Pompe Patient and Scientific Conference! The Conference will be held in San Antonio, Texas from October 30-November 1, 2015. In order to assist with Conference planning, we ask...
Genzyme’s Pompe Community Program Update for International Pompe Day
Please click here to read the press release.
Acid Maltase Deficiency Association
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