In this powerful episode of What is Public Health, I sit down with Sharon Terry, the President and CEO of Genetic Alliance, to explore how advocacy is transforming healthcare and empowering patients and families. Sharon’s journey into health advocacy began when her children were diagnosed with a rare genetic condition — a moment that led her to co-found a research and advocacy organization, drive groundbreaking genetic discoveries, and help pass key health protection laws.Sharon shares how she turned personal challenges into a global movement, helping patients and communities take charge of their health and driving collaboration between researchers, policymakers, and the healthcare industry. If you’ve ever wondered how to make a real impact in healthcare or felt overwhelmed by the system — this episode will leave you inspired and motivated to take action.What You’ll Learn in This Episode:- How a personal health crisis led to a powerful advocacy movement- The early challenges of building a patient-led research organization- How to build sustainable partnerships with researchers, policymakers, and industry- The future of genetic research and patient advocacy- Practical advice for sustaining and growing a nonprofit in the face of funding and policy challenges- How patients and communities can work together to drive meaningful changeKey Topics:Healthcare advocacyPatient empowermentGenetic research and innovationNonprofit leadershipPolicy and healthcare reformBuilding sustainable partnershipsResources & Links:Learn more about Genetic Alliance: https://geneticalliance.orgWatch Sharon Terry’s TED Talk: Sharon Terry: The Patient Advocate Who’s Taming Genetic Data. More on the Genetic Information Nondiscrimination Act (GINA): https://www.genome.gov/about-genomics/policy-issues/Genetic-DiscriminationConnect with Genetic Alliance on Twitter: @GeneticAlliancePXE International: https://www.pxe.orgGestalt Awareness Practice:  http://www.tribalground.com and http://www.gestaltpracticelibrary.org Listen & Subscribe:Don’t forget to subscribe to What is Public Health on your favorite podcast platform and leave a review if you enjoyed this episode! Your feedback helps us bring more conversations like this to you.Join the Conversation:Have thoughts on this episode? Reach out on social media and let us know how you’re driving change in healthcare and advocacy.Tune in now and discover how advocacy is reshaping healthcare for the better!

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