Cystic Fibrosis Podcast 192 Emily’s Entourage

In the latest Cystic Fibrosis Podcast, Jerry speaks with Emily Kramer-Golinkoff about the role of a patient advocate organization in driving drug development in rare disease.
Emily, a 33-year-old who has a nonsense mutation of CF, is a co-founder of Emily’s Entourage, a 501 3(c) that’s goal is to accelerate research for new treatments and a cure for CF. She is an internationally recognized patient advocate and speaker, has a Master’s degree in Bioethics and is certified in Clinical Ethics Mediation, was named “Champion of Change” by President Obama’s Precision Medicine Initiative, and has been featured by CNN.com, Time.com, AOL.com, People.com, and more for her work with her charity.

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Fighting an old enemy in the battle against cystic fibrosis

http://msutoday.msu.edu/news/2017/fighting-an-old-enemy-in-the-battle-against-cystic-fibrosis/

Published: Aug. 29, 2017

Michael Maiden, a Michigan State University College of Osteopathic Medicine student and doctoral candidate in the Department of Microbiology and Molecular Genetics, was Continue reading Fighting an old enemy in the battle against cystic fibrosis