info@amda-pompe.org

{
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

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.
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

Recent Blog Posts

 

Upcoming
Webinar

Making Sense of Research Studies and Registries

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.

read more

Upcoming Talking With Your Pompe Peeps Session

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.

CATEGORIES

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