Webinar Details Title: Mental Health for Pompe DiseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More: The Importance of Being Understood Date: Thursday, May 14, 2026 Time: 12 p.m.
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 li... More to AAVA harmless virus commonly used as a delivery system in gene therapy to carry healthy genes into cell... More Gene TherapyA developing treatment that aims to fix, replace, or add genetic instructions. More: 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
February 5, 2026
Tiffany House Receives RareVoice Award for State Advocacy
We are honored to share this moment recognizing Tiffany House as a recipient of the RareVoice Award for State Advocacy.
February 4, 2026
2026 PCMA Pull for Pompe Fundraiser
The AMDA is excited to announce that the 15th Annual PCMA’s Pull for Pompe fundraiser will take place on Saturday,
January 28, 2026
Making Sense of Research Studies and Registries
Webinar Details Title: Making sense of research studies and registries Date: Thursday, February 19, 2026 Speakers:Karmen TrzupekRyan Colburn Webinar Overview:Have you
January 4, 2026
With Gratitude: Honoring Our 2025 Donors
The Acid Maltase Deficiency Association (AMDA) is deeply grateful to the individuals, families, and organizations who contributed in 2025. Your
December 31, 2025
Grief Happens in Rare Disease: Let’s Talk About it Already
Webinar Details Title: Grief Happens in Rare Disease: Let’s Talk About it Already Date: Thursday, January 15, 2026 Speaker:Lisa Keefauver,
November 28, 2025
Tiffany House and Maryze Schoneveld van der Linde Honored at Sanofi’s Global Rare Impact Awards
At Sanofi’s inaugural Global Rare Impact Awards ceremony held on November 14, 2025, in Vienna, three extraordinary leaders were recognized
October 1, 2025
Check Back Soon for Upcoming Webinars
We don’t have a webinar scheduled at the moment, but more exciting sessions are on the way! Check back soon







