Published 2025-04-21
Voices of Resilience: Women Leaders in the Rare Disease Community
40 min
Transcript
Today, approximately 10,000 rare diseases collectively affect as many as 400 million people around the world, and women leaders have long been at the forefront of bringing awareness to these diseases and driving change. Katie Couric moderates a panel that includes Tania Simoncelli of Chan Zuckerberg Initiative, whose “Rare as One” campaign gives to rare disease researchers and support groups, Tara Zier who founded the Stiff Person Syndrome Research Foundation, Susan Dando of the Smith-Kingsmore Syndrome Foundation, and Dr. Christina Miyake, a researcher studying TANGO2 deficiency disorder. This panel will explore the resilience, determination, and ingenuity required to address the unique challenges in rare disease advocacy and research. Panelists will share their experiences in breaking barriers, leading patient-centered initiatives, and building collaborations that move the needle toward treatments and cures. #SponsoredbyCZI
Hosted on Acast. See acast.com/privacy for more information.
More description
Today, approximately 10,000 rare diseases collectively affect as many as 400 million people around the world, and women leaders have long been at the forefront of bringing awareness to these diseases and driving change. Katie Couric moderates a panel that includes Tania Simoncelli of Chan Zuckerberg Initiative, whose “Rare as One” campaign gives to rare disease researchers and support groups, Tara Zier who founded the Stiff Person Syndrome Research Foundation, Susan Dando of the Smith-Kingsmore Syndrome Foundation, and Dr. Christina Miyake, a researcher studying TANGO2 deficiency disorder. This panel will explore the resilience, determination, and ingenuity required to address the unique challenges in rare disease advocacy and research. Panelists will share their experiences in breaking barriers, leading patient-centered initiatives, and building collaborations that move the needle toward treatments and cures. #SponsoredbyCZI
Hosted on Acast. See acast.com/privacy for more information.