This past May, our hearts broke twice. Within just two weeks, the Pompe community said goodbye to two extraordinary advocates:

A Milestone for Pompe Families This September September is Newborn Screening Awareness Month, a time to celebrate the programs that

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 which the body cannot properly break down glycogen, leading to buildup tha... More to its newborn screening

A Heartfelt Thank You to Our Community During this time of profound loss, the outpouring of love, support, and kindness

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