From Pain To Purpose: Kari Luther Rosbeck

30 mar 2022 · 35 min. 20 sec.

Descrizione

https://www.tscalliance.org/our-team/kari-luther-rosbeck/ is the President & Chief Executive Officer of the https://www.tscalliance.org/, a nonprofit whose mission is to find a cure for https://www.tscalliance.org/about-tsc/what-is-tsc/ (TSC) while improving the lives of those affected....

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Kari Luther Rosbeck is the President & Chief Executive Officer of the TSC Alliance, a nonprofit whose mission is to find a cure for Tuberous Sclerosis Complex (TSC) while improving the lives of those affected. Kari began her life as a Theater nerd and started her own company in NYC after graduating from SUNY Albany. Tragedy struck when she lost her newborn to SIDS. Today she leads an incredible team and fights for equity and quality of life of tens of thousands of patients impacted by this rare genetic condition. Aside from nerding out on all things Sondheim, she and host Matthew Zachary also dive into the "How a bill becomes a law" process of drug development. There's nothing quite like getting a drug approved that you know will actually make a dent in the universe for thousands of people. Enjoy the show.NORDpod is the official podcast of The National Organization for Rare Disorders. For more information visit https://rarediseases.org.
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Autore	OffScrip Media
Organizzazione	OffScrip Media
Sito	-
Tag	#community #covid-19 #digital health #living rare #living strong #mike porath #national organization for rare #nordpod #peter saltonstall #rare cancer #rare cancer coalition #rare cancer day #rare cancers #rare disease community #rare disease day #rare diseases #telehealth #telemedicine #the mighty #voice of rare disease