Season 1 Episode 12 | February 28, 2025
In this episode of PDSA’s podcast, Bruised but not Broken: Living with ITP, Caroline Kruse, President and CEO of the Platelet Disorder Support Association, interviews Pam Gavin, CEO of the National Organization for Rare Disorders (NORD). They discuss the challenges and triumphs of living with rare diseases, focusing on immune thrombocytopenia (ITP). Pam shares her personal connection to the rare disease community and highlights NORD's mission to support patients through advocacy, research, and policy initiatives.
Listeners will gain insights into the importance of patient registries, the impact of the Orphan Drug Act, and the role of patient-focused drug development. The episode also covers the significance of Rare Disease Day, the need for comprehensive care through Centers of Excellence, and the financial assistance programs available for rare disease patients. With empowering stories, practical tips, and a deep dive into the world of rare disease advocacy, this episode is a must-listen for anyone interested in the rare disease community and discovering how they can make a difference in the lives of those affected by rare conditions.