October 22, 2026
Biomarkers of Central and Musculoskeletal Symptoms in Infantile- and Late-Onset Pompe Disease
Webinar Details Title: BiomarkersA measurable sign in the body that helps track disease progression or treatment response. of Central and Musculoskeletal Symptoms in Infantile- and Late-Onset Pompe DiseaseA form of Pompe disease that begins after infancy and usually progresses more slowly. Date: Tuesday, November 17, 2026
Webinar Details Title: Stronger Together: Mental Health, Grief, and Caregiving in Pompe DiseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup that damages muscles and can affect breathing and, in some cases, the heart. Date: Monday, November 9, 2026 Time: 1
August 30, 2026
2026-2027 AMDA Research Grant Call for Letters of Intent
AMDA RESEARCH GRANT PROGRAM Call for Letters of Intent The Acid Maltase Deficiency Association (AMDA) is pleased to announce the
Webinar Details Title: Biomarkers of Central Nervous System Involvement in Pompe Disease: New Learnings Date: Thursday, September 24, 2026 Speaker:Kristen Hagarty-Waite,
August 7, 2026
Reports of Nexviazyme Shipment Delays
August 7, 2026 Pompe Alliance, Marshall’s Mountain, Grant’s Giants, Pompe Warrior Foundation, Ryan Colburn of the Pompe Community, and the
July 31, 2026
What Do Your Pompe Test Results Really Mean?
Webinar Details Title: What Do Your Pompe Test Results Really Mean? The Evolution of Pompe Diagnostics: The Past, Present, and Future
May 30, 2026
A Heartfelt Thank You to the Krueger Family
A Heartfelt Thank You to the Krueger Family The Acid Maltase Deficiency Association is deeply grateful to the Krueger family
Webinar Details Title: Mental Health for Pompe Disease: The Importance of Being Understood Date: Thursday, May 14, 2026 Speakers:Heather ShortenNadia Bodkin,
March 30, 2026
Immune Responses to AAV Gene Therapy
Webinar Details Title: Immune ResponsesThe body's natural defense system reacting to substances it sees as foreign, including treatments like enzyme replacement therapy or gene therapy. to AAVA harmless virus commonly used as a delivery system in gene therapy to carry healthy genes into cells. Gene TherapyA developing treatment that aims to fix, replace, or add genetic instructions.: Challenges and Emerging Solutions Date: Thursday, April 23, 2026 Speaker:Abigail Benkert, MD
Honoring Advocacy: Celebrating Tiffany House and the RareVoice Awards This week is Rare Disease Week, with events and activities taking





