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Webinar Details Title: Overview of Breathing Muscle WeaknessA loss of strength that can affect movement, posture, and sometimes breathing. More in Neuromuscular Disease (NMD) Date: Thursday, September 25, 2025 Speaker:Andrea Klein Webinar

The winner of the 2024 AMDA Helen Walker Research Grant: Dr. Jaymin Upadhyay, Boston Children’s Hospital, Harvard Medical School Project

Great news for the rare disease community—Texas has taken a big step by adding Pompe diseaseA rare genetic disease in

Webinar Details Title: The Role of Genetic Counselors on the Pompe DiseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More Care Team Date: Monday, June 9, 2025 Speaker:Erin

Tiffany Laurel House January 22, 1983 – May 25, 2025 Tiffany L. House, 42, of San Antonio, Texas, passed away

Webinar Details Title: The Pompe Survey: Past Insights and Future Goals Date: Tuesday, March 25, 2025 Speakers:Lauren Dobischok, MScMichelle Kruijshaar,

Webinar Details Title: Evolving our understanding of Pompe DiseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More – data driven insights Date: Wednesday, February 26, 2025 Speaker:Ryan Colburn