Raising Awareness for Rare Diseases - A Personal Journey with Pompe

Explore a powerful TEDxPune talk that delves into the critical importance of awareness in the realm of rare diseases. Follow Prasanna Shirol's personal journey as he shares his battle with Pompe, a genetic condition causing glycogen accumulation in cell lysosomes, sparked by his daughter's diagnosis. Gain insights into Shirol's relentless advocacy efforts as the Co-founder & Executive Director of ORDI (Organization for Rare Diseases India) and his recognition as a Rare Champion of Hope. Discover how this Ashoka Fellow and visionary leader has been at the forefront of rare disease advocacy since 2007, contributing to global initiatives and serving as a member of ICMR-CECHR. Learn about his role as President of the Pompe Foundation and his involvement with the WHO Collaborative Global Network for Rare Diseases. Be inspired by this 16-minute talk that showcases resilience, leadership, and the power of raising awareness for rare diseases.