Jul 30, 2025 | ARCHIVES, NEWS
A Legacy of Leadership, Love, and Lifesaving Work in the Pompe Community This August, the Acid Maltase Deficiency Association (AMDA) turns 30. Thirty years of progress. Thirty years of advocacy. Thirty years of showing up for patients and families around the world....
Jul 26, 2025 | ARCHIVES, NEWS
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...
Jul 18, 2025 | ARCHIVES, NEWS
Great news for the rare disease community—Texas has taken a big step by adding Pompe disease to its newborn screening panel! This major advancement in protecting the health of Texas infants also marks a meaningful moment for the Acid Maltase Deficiency Association...
Jun 14, 2025 | ARCHIVES, NEWS
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...
Jun 9, 2025 | PAST WEBINARS
Webinar Details Title: The Role of Genetic Counselors on the Pompe Disease Care Team Date: Monday, June 9, 2025 Time: 2 PM CT / 3 PM ET Speaker:Erin Huggins, MS, CGC Webinar Overview:This webinar focuses on a unique type of clinician: the genetic counselor. Genetic...
