We don’t have a webinar scheduled at the moment, but more exciting sessions are on the way! Check back soon
Webinar Details Title: Overview of Breathing Muscle Weakness in Neuromuscular Disease (NMD) Date: Thursday, September 25, 2025 Speaker:Andrea Klein Webinar
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An illustration of silhouettes standing together with a faint DNA helix in the background, symbolizing the Pompe community’s shared grief and resilience.
This past May, our hearts broke twice. Within just two weeks, the Pompe community said goodbye to two extraordinary advocates:
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Pompe Disease Newborn Screening and RUSP Alignment in the U S Updated Logo
A Milestone for Pompe Families This September September is Newborn Screening Awareness Month, a time to celebrate the programs that
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A Legacy of Leadership, Love, and Lifesaving Work in the Pompe Community This August, the Acid Maltase Deficiency Association (AMDA)
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The winner of the 2024 AMDA Helen Walker Research Grant: Dr. Jaymin Upadhyay, Boston Children’s Hospital, Harvard Medical School Project
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Great news for the rare disease community—Texas has taken a big step by adding Pompe diseaseA rare genetic disease in
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A Heartfelt Thank You to Our Community During this time of profound loss, the outpouring of love, support, and kindness
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Webinar Details Title: The Role of Genetic Counselors on the Pompe Disease Care Team Date: Monday, June 9, 2025 Speaker:Erin
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Tiffany Laurel House January 22, 1983 – May 25, 2025 Tiffany L. House, 42, of San Antonio, Texas, passed away
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