About AMDA
The Acid Maltase Deficiency Association’s driving force lies in its efforts to advance research, improve care, and ensure early diagnosis for individuals and families affected by Pompe disease. Founded by the House family and guided by individuals living with Pompe disease, AMDA works through deep collaboration with global experts, industry, and policymakers to translate science into informed, compassionate support for the Pompe disease community.
What is Pompe disease?
Research
Webinars
News
Conferences
Recent Articles
With Gratitude: Honoring Our 2025 Donors
The Acid Maltase Deficiency...
New Year’s Resolutions and Hobbies
For many, the end of the calendar year...
Burnout, Creativity, and Rest
For me, music can be one of the best...
Tiffany House and Maryze Schoneveld van der Linde Honored at Sanofi’s Global Rare Impact Awards
At Sanofi’s inaugural Global Rare...
Morgan’s Story: When Hope Met Hurricane Katrina
Editor's NoteIn the early years of...
Grief and Rare Disease: Recognizing Loss and Building Grief Literacy
This past May, our hearts broke twice....
Upcoming
Webinar
Making Sense of Research Studies and Registries
Title: Making sense of research studies and registries
Date: Thursday, February 19, 2026
Time: 7 PM CST / 8 PM EST
Speakers:
Karmen Trzupek
Ryan Colburn
Summary:
Have you heard about research studies and patient registries for Pompe disease? These studies are a critical tool in capturing the patient experience, which improves disease understanding, management, and treatment options.
Join this session to learn about the different types of research studies and patient registries for Pompe disease. What are the differences between them? How is the data shared and used? We’ll cover what you may want to consider when choosing to participate, cover a few of the historical registries that have contributed to progress in Pompe, and share an innovative patient led registry, Progress4Pompe, where patients own their data and choose how to share it.
Upcoming Talking With Your Pompe Peeps Session
Our Adaptations with Pompe Disease
Infusions can feel overwhelming at first — and then, over time, they become part of life. In this Talking With Your Pompe Peeps session, Alison Breitbarth (Grant’s Giants) will help us talk openly about what it looks like to normalize infusion day for kids and families — while keeping the conversation welcoming for anyone navigating infusions at any age.
We’ll swap first infusion stories, share what helped (and what we wish we’d known), and trade practical tips for making the day smoother — from comfort items and routines to mindset shifts that build confidence. Alison will also share ideas behind her Infusion Play Kit, designed to bring playfulness into a day that can otherwise feel stressful.
Get Involved
Your generous contribution will go a long way into improving the quality of life of Pompe Disease Patients worldwide. Donations go towards Pompe Disease Research.
Acid Maltase Deficiency Association
For the AMDA videos: All Rights reserved. No part of the AMDA's videos may be reproduced or transmitted in any form or by any means, electronic or mechanical, without the written permission of the copyright holder.
If you are interested in learning more about Pompe Disease and would like to make a contribution in support of necessary research, please contact us at:
info@amda-pompe.org
THE AMDA
PO Box 700248
San Antonio, Texas 78270 USA