Jan 28, 2026 | UPCOMING WEBINARS
Webinar Details Title: Making sense of research studies and registries Date: Thursday, February 19, 2026 Time: 7 PM CST / 8 PM EST Speakers:Karmen TrzupekRyan Colburn Webinar Overview:Have you heard about research studies and patient registries for Pompe disease? ...
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...
Oct 1, 2025 | UPCOMING WEBINARS
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. Sign up for our newsletter! Past AMDA Webinars Overview of Breathing...
Sep 30, 2025 | PAST WEBINARS
Webinar Details Title: Overview of Breathing Muscle Weakness in Neuromuscular Disease (NMD) Date: Thursday, September 25, 2025 Speaker:Andrea Klein Webinar Overview:An introduction to the concepts of breathing and coughing muscle weakness, this presentation highlights...
Jun 9, 2025 | PAST WEBINARS
Webinar Details Title: The Role of Genetic Counselors on the Pompe Disease Care Team Date: Monday, June 9, 2025 Speaker:Erin Huggins, MS, CGC Webinar Overview:This webinar focuses on a unique type of clinician: the genetic counselor. Genetic counselors are specially...
Mar 25, 2025 | PAST WEBINARS
Webinar Details Title: The Pompe Survey: Past Insights and Future Goals Date: Tuesday, March 25, 2025 Speakers:Lauren Dobischok, MScMichelle Kruijshaar, PhD Webinar Overview:Launched in 2002, the IPA/Erasmus MC Pompe Survey collects information on the impacts of Pompe...
Feb 26, 2025 | PAST WEBINARS
Webinar Details Title: Evolving our understanding of Pompe Disease – data driven insights Date: Wednesday, February 26, 2025 Speaker:Ryan Colburn Webinar Overview:An overview of how NBS enabled significant updates to Pompe epidemiology (Prevalence, etc), and how...
Jan 13, 2025 | PAST WEBINARS
Webinar Details Title: The ABCs of Pompe Disease Date: Monday, January 13, 2025 Speaker:Erin Huggins, MS, CGC Webinar Overview:Are you looking for information on Pompe disease or trying to navigate a new diagnosis? Overwhelmed by the amount of information online and...
Feb 26, 2024 | PAST WEBINARS
Webinar Details Title: Evaluating gene therapies for Pompe disease – clinical trial goals and assessments Date: Monday, February 26, 2024 Speaker:Jordi Díaz-Manera, MD, PhDChristine S. BrownMark Walzer, PhD Webinar Overview:This Astellas Gene Therapies...
Nov 7, 2023 | PAST WEBINARS
Webinar Details Title: Development of Gene Therapy for Pompe Disease: Recent History Date: Tuesday, November 7, 2023 Speaker:Dr. Dwight Koeberl Webinar Overview:Dr. Koeberl will discuss the rationale for gene therapy for Pompe disease. He will provide a summary of...
