Presented by SHE Media

Making The Impossible, Possible: How patients are driving transformative science in rare disease

Mar 9, 2024

10:20am – 11:00am CT

As many as 10,000 rare diseases affect over 300 million people globally, but many rare disease patients have never met anyone else with their condition. So how do patients connect and drive research in their communities? Join us as we discuss how patients and researchers are partnering to transform the research ecosystem and advance treatments and cures for their communities.


Tania Simoncelli, VP of Science in Society at CZI
Jennifer Canvasser, Founder and Executive Director of the NEC Society
Nasha Fitter, Co-Founder of the FOXG1 Research Foundation
Monkol Lek, Assistant Professor of Genetics at Yale School of Medicine and rare disease patient
Moderator: Katie Couric, Award-Winning Journalist, #1 NYT Best-Selling Author, & Co-Founder, Katie Couric Media

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Programming descriptions are generated by participants and do not necessarily reflect the opinions of SXSW.

photo of Katie Couric
Katie Couric

Katie Couric Media

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