AMDA Webinar Program
The AMDA Webinar Program facilitates the exchange of information between the Pompe patient community and professionals that have expertise in the field.
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
Living with Pompe disease often means finding new ways to adapt. In this Talking With Your Pompe Peeps (TWYPP) session, George, a dad of a young adult diagnosed with Pompe disease, facilitates a peer-led conversation about the everyday adaptations families and individuals make to support fuller, more meaningful lives. Participants are invited to share what has worked for them and learn from one another’s experiences.
Check Back Soon for Upcoming Talking With Your Pompe Peep Sessions
We don’t have a webinar scheduled at the moment, but more exciting sessions are on the way! Check back soon for details, or sign up for our newsletter to be notified when new webinars are announced.
Recording or reposting AMDA webinars or Talking With Your Pompe Peeps Sessions is prohibited without AMDA’s prior express written permission. Unauthorized use may result in takedown demands and legal action.
Video Library
Webinars
Talking With Your Pompe Peeps
AMDA/IPA International Pompe Patient & Scientific Conferences
2024 AMDA Pompe Conference
2019 AMDA Pompe Conference
2015 AMDA Pompe Conference
2011 AMDA Pompe Conference
2006 AMDA Pompe Conference
2001 AMDA Pompe Conference
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