Jan 28, 2026 | PAST WEBINARS
Webinar Details Title: Making sense of research studies and registries Date: Thursday, February 19, 2026 Time: 7 p.m. CST / 8 p.m. EST Speakers:Karmen TrzupekRyan Colburn Webinar Overview:Have you heard about research studies and patient registries for Pompe disease? ...
Jan 4, 2026 | ARCHIVES, NEWS
The Acid Maltase Deficiency Association (AMDA) is deeply grateful to the individuals, families, and organizations who contributed in 2025. Your generosity makes it possible for us to fund research and promote public awareness of Acid Maltase Deficiency, also known as...
Jan 3, 2026 | ARCHIVES, ARTICLES
New Year’s Resolutions and Hobbies For many, the end of the calendar year is often packed to the brim with holiday cheer, friends, and family, and there’s a sense of societal pressure that comes with the fanfare. As we stroll past the malaise that can come from...
Dec 31, 2025 | PAST WEBINARS
Webinar Details Title: Grief Happens in Rare Disease: Let’s Talk About it Already Date: Thursday, January 15, 2026 Speaker:Lisa Keefauver, MSW Webinar Overview:Given 100% of us experience loss, multiple times in our lives, means that when we work with humans, we’re...
Dec 27, 2025 | PAST TWYPP SESSIONS
Session Details Title: Infusion Day Playbook: Stories, Tips, and Support Date: Thursday, January 29, 2026 Moderator:Alison Breitbarth, Grant’s Giants Session Summary:Infusions can feel overwhelming at first — and then, over time, they become part of life. In this...
