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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