<p>This week on The Genetics Podcast, Patrick is joined by Sharon Terry, President &amp; 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.</p><p><strong>Show Notes: </strong></p><p><strong>0:00 </strong>Intro to The Genetics Podcast</p><p><strong>00:59</strong> Welcome to Sharon and a discussion of the personal experience with rare disease that started her journey</p><p><strong>03:47</strong> Reasons why Sharon decided to establish the first layperson-led biobank</p><p><strong>05:34 </strong>Challenges with setting up the biobank infrastructure</p><p><strong>07:00 </strong>Balancing financial factors in a non-profit organization </p><p><strong>09:30</strong> Recent patterns and future insight into rare disease drug discovery framework and regulation</p><p><strong>15:32 </strong>Barriers to widespread collaboration and cooperation in rare disease research, and why it should be approached from a public health perspective</p><p><strong>18:12 </strong>Background and experiences from the iHope Genetic Health program in low- to middle-income countries</p><p><strong>24:44 </strong>Sharon’s perspective on current challenges with the Genetic Information Non-discrimination Act</p><p><strong>28:49</strong> Sharon’s lessons learned in her patient advocacy and policy work, and her hopes for future legislation</p><p> </p><p><strong>33:04</strong> Sharon’s hopes for improved access to genetic testing and treatment for children in underserved communities</p><p><strong>34:34 </strong>How Sharon learned about rare diseases and genetics as a “homeschooling mom without a degree”</p><p><strong>37:54 </strong>Insights into how elements of spirituality can support advocacy work</p><p><strong>40:18 </strong>Closing remarks</p><p><strong>Find out more</strong></p><ul><li><p>Genetic Alliance (<a href="https://geneticalliance.org/"><u>https://geneticalliance.org/</u></a>)</p></li></ul><p>Please consider rating and reviewing us on your chosen podcast listening platform! </p><p><a href="https://drive.google.com/file/d/1Bp2_wVNSzntTs_zuoizU8bX1dvao4jfj/view?usp=share_link"><u>https://drive.google.com/file/d/1Bp2_wVNSzntTs_zuoizU8bX1dvao4jfj/view?usp=share_link</u></a><br></p>

The Genetics Podcast

Sano Genetics

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

MAR 20, 202542 MIN
The Genetics Podcast

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

MAR 20, 202542 MIN

Description

<p>This week on The Genetics Podcast, Patrick is joined by Sharon Terry, President &amp; 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.</p><p><strong>Show Notes: </strong></p><p><strong>0:00 </strong>Intro to The Genetics Podcast</p><p><strong>00:59</strong> Welcome to Sharon and a discussion of the personal experience with rare disease that started her journey</p><p><strong>03:47</strong> Reasons why Sharon decided to establish the first layperson-led biobank</p><p><strong>05:34 </strong>Challenges with setting up the biobank infrastructure</p><p><strong>07:00 </strong>Balancing financial factors in a non-profit organization </p><p><strong>09:30</strong> Recent patterns and future insight into rare disease drug discovery framework and regulation</p><p><strong>15:32 </strong>Barriers to widespread collaboration and cooperation in rare disease research, and why it should be approached from a public health perspective</p><p><strong>18:12 </strong>Background and experiences from the iHope Genetic Health program in low- to middle-income countries</p><p><strong>24:44 </strong>Sharon’s perspective on current challenges with the Genetic Information Non-discrimination Act</p><p><strong>28:49</strong> Sharon’s lessons learned in her patient advocacy and policy work, and her hopes for future legislation</p><p> </p><p><strong>33:04</strong> Sharon’s hopes for improved access to genetic testing and treatment for children in underserved communities</p><p><strong>34:34 </strong>How Sharon learned about rare diseases and genetics as a “homeschooling mom without a degree”</p><p><strong>37:54 </strong>Insights into how elements of spirituality can support advocacy work</p><p><strong>40:18 </strong>Closing remarks</p><p><strong>Find out more</strong></p><ul><li><p>Genetic Alliance (<a href="https://geneticalliance.org/"><u>https://geneticalliance.org/</u></a>)</p></li></ul><p>Please consider rating and reviewing us on your chosen podcast listening platform! </p><p><a href="https://drive.google.com/file/d/1Bp2_wVNSzntTs_zuoizU8bX1dvao4jfj/view?usp=share_link"><u>https://drive.google.com/file/d/1Bp2_wVNSzntTs_zuoizU8bX1dvao4jfj/view?usp=share_link</u></a><br></p>