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It is difficult to say what is impossible for the dreams of yesterday are the hopes of today and the reality of tomorrow. – Robert H. Goddard

Our Mission

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.
LEARN MORE ABOUT AMDA

What is Pompe disease?

Pompe disease is one of a family of 49 rare genetic disorders known as Lysosomal Storage Diseases or LSDs. Pompe disease is also known as Acid Maltase Deficiency or Glycogen Storage Disease type II.

Research

Webinars

News

Conferences

If you are a newly diagnosed patient, please email info@amda-pompe.org and someone will return your message within 24-48 hours.

Recent News

Setting the Record Straight

The truth of Pompe disease

The popular narrative around Pompe treatment has often overlooked the scientists and researchers who truly made it possible. Here are two essential voices on the real history.

Editorial

Pompe in the News: What Happened to the Truth?

Tiffany House — AMDA President (2011 – 2025)

Written on Rare Disease Day 2017, Tiffany’s editorial addresses how media coverage repeatedly misrepresented the origins of Myozyme/Lumizyme and honors the research teams at Rotterdam and Duke University, whose decades of work made enzyme replacement therapy possible.

Read the editorial

Blog

The Pompe Story

Dr. Kevin O’Donnell — IPA founding member

Dr. O’Donnell was there. A founding member of the International Pompe Association, he witnessed firsthand the triumphs and setbacks that shaped the community. His blog is a first-person account of what actually happened and a vital resource for anyone who wants the full picture.

Visit Kevin's blog

Recent Blog Posts

 

Upcoming
Webinar

Mental Health for Pompe Disease: The Importance of Being Understood

Mental Health for Pompe Disease: The Importance of Being Understood

Title: Mental Health for Pompe Disease: The Importance of Being Understood
Date: Thursday, May 14, 2026
Time: 12 p.m. CT / 1 p.m. ET
Speakers:
Heather Shorten
Nadia Bodkin, Pharm. D., MS
JC Muyl

Summary:
Living with Pompe disease means navigating far more than the physical realities of a complex, progressive condition. The emotional and psychological toll, including the uncertainty, the isolation, and the challenge of finding care that truly sees the whole person, is a dimension of this journey that is too often left unaddressed. This webinar brings together three advocates at the forefront of mental health and rare disease: Heather Shorten of Pompe Alliance, Nadia Bodkin of the Rare Advocacy Movement, and JC Muyl of Mental Health For Rare.

Drawing on community research and lived experience, our presenters will explore the unique emotional challenges tied to living with Pompe disease, why feeling understood matters so deeply, and what meaningful mental health support can look like for this community. Whether you are a patient, caregiver, healthcare provider, or advocate, this is an opportunity to be part of an important and long-overdue conversation about whole-person care in the Pompe disease community.

read more

Upcoming Talking With Your Pompe Peeps Session

Let’s Talk Diet — The Real Talk

Let’s Talk Diet — The Real Talk

Title: Let’s Talk Diet — The Real Talk
Date: Thursday, May 28, 2026
Time: 12 p.m. CT / 1 p.m. ET
Moderators:
AMDA Staff
Summary:
We all know eating well matters, but let’s be honest, actually sticking to a diet is hard. Life gets busy, cravings are real, and sometimes the foods we’re “supposed” to eat just don’t excite us. Living with Pompe adds another layer to that challenge, and nobody gets that better than your Pompe Peeps.

This session is all about having an open, honest conversation about why diet matters for our community, the everyday struggles of staying on track, and — the fun part — swapping recipes that actually taste good. We’ll kick things off with a few recipes to get the ideas flowing, but we really want to hear from you. What’s on your plate? What works? What doesn’t?

read more

Tiffany Laurel House

January 22, 1983  –  May 25, 2025

President, Acid Maltase Deficiency Association – Chair, International Pompe Association

“She was a beacon of grace, poise, and determination until the very end.”

Remember Tiffany

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

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.

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REGISTER WITH THE AMDA

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