Webinar Details
Title: Evolving our understanding of Pompe Disease – data driven insights
Date: Wednesday, February 26, 2025
Time: 1 PM CT / 2 PM ET
Speaker:
Ryan Colburn
Webinar Overview:
An overview of how NBS enabled significant updates to Pompe epidemiology (Prevalence, etc), and how the strength of this data enables an improved foundation for evolving our understanding of Pompe around the world, and across the full spectrum of disease. We’ll also cover how this foundation relates to other important topics, including some previously covered in this webinar series such as: ABC’s of Pompe, Disease Management in the NBS era, Treatment development, Emerging research, etc.
Speaker Biography
Ryan Colburn
Ryan Colburn has some genetic variants, just like everyone else. In 2015 he learned that some of his variants are associated with a rare metabolic disorder – and has unapologetically altered course ever since. His professional background is in development, engineering and operations management; as applied to race cars, airplanes, rockets, satellites… and rare diseases. He’s a driven student of process (its everywhere) and in this context, applying what he’s learned along the way to contribute to the health of the rare disease ecosystem. He’s passionate about empowerment and engagement – and shifting the view of patient as “subjects” to one of participants, collaborators, and partners who can help to find the most effective ways to accelerate progress on understanding and solving challenges in rare disease.