March 21, 2023

Why Rare Disease Research is So Important

20 minutes

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Rare diseases, despite their name, are more prevalent than one might expect, impacting up to 10% of the population, particularly children. But a staggering 95% of the 10,000 known rare diseases remain without effective treatments, posing an immense challenge for affected families, foundations, and scientists working tirelessly to remedy the situation.

Nasha Fitter (CEO, FOXG1 Research Foundation and VP, RWE and Ciitizen Platform at Invitae) joins CareTalk to explain the importance of rare disease research and why there is hope on the horizon.

ABOUT CARETALK
CareTalk is a weekly podcast that provides an incisive, no B.S. view of the US healthcare industry. Join co-hosts John Driscoll (President U.S. Healthcare and EVP, Walgreens Boots Alliance) and David Williams (President, Health Business Group) as they debate the latest in US healthcare news, business and policy.

ABOUT NASHA FITTER
Nasha Fitter is a leader in the rare disease space known for her breakthrough work on utilizing real world evidence to accelerate treatments. She is the mother of a child with the rare neurological condition, FOXG1 Syndrome, and co-founded and leads the FOXG1 Research Foundation. Nasha is also the VP of Ecosystem Partnerships at genetic testing company Invitae. Nasha serves on the board for the ACMG Foundation for Genetic and Genomic Medicine and has an MBA from the Harvard Business School.

Learn more about FOXG1 Research Foundation
Learn more about FOXG1 Syndrome

Dive deeper into this episode and read our article, "Rare Disease Research and Its Potential To Unlock Medical Mysteries."

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