TOP NEWS
2024 Helen Walker Research Grant Recipient: Dr. Jaymin Upadhyay, Boston Children’s Hospital, Harvard Medical School
The winner of the 2024 AMDA Helen Walker Research Grant: Dr. Jaymin Upadhyay, Boston Children’s Hospital, Harvard Medical School Project Title: Implementation of At-Home Functional Biomarker Methods in Patients with Pompe Disease. For the second year in a row, the...
OTHER NEWS
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...
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,...
Acid Maltase Deficiency Association
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