EP 179: Redefining rare disease realities with Sharon Terry of the Genetic Alliance

This week on The Genetics Podcast, Patrick is joined by Sharon Terry, President & CEO of Genetic Alliance. They discuss how Sharon established a layperson-led biobank, her long-term work on rare diseases and patient advocacy, and her program to bring genetic technology to patients in low- to middle-income countries.

Show Notes: 

0:00 Intro to The Genetics Podcast

00:59 Welcome to Sharon and a discussion of the personal experience with rare disease that started her journey

03:47 Reasons why Sharon decided to establish the first layperson-led biobank

05:34 Challenges with setting up the biobank infrastructure

07:00 Balancing financial factors in a non-profit organization 

09:30 Recent patterns and future insight into rare disease drug discovery framework and regulation

15:32 Barriers to widespread collaboration and cooperation in rare disease research, and why it should be approached from a public health perspective

18:12 Background and experiences from the iHope Genetic Health program in low- to middle-income countries

24:44 Sharon’s perspective on current challenges with the Genetic Information Non-discrimination Act

28:49 Sharon’s lessons learned in her patient advocacy and policy work, and her hopes for future legislation

33:04 Sharon’s hopes for improved access to genetic testing and treatment for children in underserved communities

34:34 How Sharon learned about rare diseases and genetics as a “homeschooling mom without a degree”

37:54 Insights into how elements of spirituality can support advocacy work

40:18 Closing remarks

Find out more

• Genetic Alliance (https://geneticalliance.org/)

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