Webinar Details Title: Mental Health for Pompe Disease: The Importance of Being Understood Date: Thursday, May 14, 2026 Speakers:Heather ShortenNadia Bodkin, Pharm. D., MSJC Muyl Webinar Overview:Living with Pompe disease means navigating far more than the physical...
Webinar Details Title: Immune Responses to AAV Gene Therapy: Challenges and Emerging Solutions Date: Thursday, April 23, 2026 Speaker:Abigail Benkert, MD Webinar Overview:Immune responses to AAV gene therapy remain a major barrier to its access and effectiveness. This...
Webinar Details Title: Making sense of research studies and registries Date: Thursday, February 19, 2026 Speakers:Karmen TrzupekRyan Colburn Webinar Overview:Have you heard about research studies and patient registries for Pompe disease? These studies are a critical...
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...
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...
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...
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...
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...
