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Past AMDA Webinars
Overview of Breathing Muscle Weakness in Neuromuscular Disease (NMD)
Title: Overview of Breathing Muscle Weakness in Neuromuscular Disease (NMD)
Date: Thursday, September 25, 2025
Time: 1 PM CST / 2 PM EST
Speaker:
Andrea Klein
Webinar Overview:
An introduction to the concepts of breathing and coughing muscle weakness, this presentation highlights the importance of medical self-advocacy to ensure positive outcomes. Topics include the role of muscles in breathing, the relevance of blood gases, the evaluation process, appropriate interventions, and more.
The Role of Genetic Counselors on the Pompe Disease Care Team
Title: The Role of Genetic Counselors on the Pompe Disease Care Team
Date: Monday, June 9, 2025
Time: 2 PM CT / 3 PM ET
Speaker:
Erin Huggins, MS, CGC
Webinar Overview:
This webinar focuses on a unique type of clinician: the genetic counselor. Genetic counselors are specially trained providers that can have an important role on your care management team. In this webinar, we’ll describe who genetic counselors are, what they do, and how they can help you and your family navigate a diagnosis of Pompe disease. At the end of the webinar, there will be a Q&A session with the speaker, a board-certified genetic counselor with several years of experience in caring for individuals with Pompe disease.
IPA/Erasmus MC Pompe Survey Update Webinar
Title: The Pompe Survey: Past Insights and Future Goals
Date: Tuesday, March 25, 2025
Time: 11 AM CT / 12 PM ET
Speakers:
Lauren Dobischok, MSc
Michelle Kruijshaar, PhD
Webinar Overview:
Launched in 2002, the IPA/Erasmus MC Pompe Survey collects information on the impacts of Pompe disease on patient’s lives, and how these impacts may change with treatment. Pompe patients from around the world provide this information through an annual questionnaire. The information collected in the Pompe Survey provides insights on the effect of different treatments and particular issues that Pompe patients may face in daily life. With second-generation ERT entering the market and other novel therapies on the horizon, insights from patients’ perspectives are more relevant than ever. Learn about the history of the Pompe Survey, key findings from the survey, and the continued importance of patient participation in achieving future goals in this webinar.