Jan 28, 2026 | PAST WEBINARS
Webinar Details Title: Making sense of research studies and registries Date: Thursday, February 19, 2026 Time: 7 p.m. CST / 8 p.m. 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...
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...
Oct 17, 2023 | PAST WEBINARS
Webinar Details Title: Defining Central Nervous System Abnormalities in Infantile and Late-Onset Pompe Disease Patients Date: Tuesday, October 17, 2023 Speakers:Raquel van GoolJaymin Upadhyay Webinar Overview:In this presentation, we will provide a short description...
