The Rare Disorder Podcast

The Rare Disorder Podcast is a podcast created by Shivani Vyas, a high school senior, young changemaker, and rare disease advocate, dedicated to spreading awareness for rare diseases. This podcast is divided into 2 main series. In the "Meet a Fighter," Shivani interviews patients and those affected by rare diseases allowing them to share their inspirational stories. In "Meet An Expert/Partner," Shivani interviews public health experts, rare disease organization leaders, rare advocacy leaders, and more!Check out my other initiatives and platforms: https://linktr.ee/theraredisorderpodcast

The Rare Disorder Podcast is a science podcast hosted by Shivani Vyas, with 43 episodes on record and a Required Pod Score of 80. PitchCentric scores this show on Booking Probability, Listen Score, and live audience signals refreshed every 24 hours.

Shivani Vyas hosts The Rare Disorder Podcast, a science show with 43 episodes published.

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  The Rare Disorder Podcast

  Leading Through Stillness: A Summer Abroad

  Aug 24, 20253 minS0

  <p>This episode isn’t about rare disease, advocacy, or biotech—at least not directly. It’s different. It’s slower. It’s personal.</p><p>I recorded this audio piece on my summer abroad in Switzerland and Italy, where I spent time hiking, wandering, and rethinking what leadership means when you’re not in control, but still choosing how to move.</p><p>It’s part travel log, part inner documentary. I talk about stillness, curiosity, presence, and how stepping away from my usual roles helped me return to them with more clarity.</p><p>If you’ve been feeling burnt ou...

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  The Rare Disorder Podcast

  Innovate, Iterate, Impact: ft. Co-Founder of AdaptTrack

  Dec 9, 202417 minS0

  <p>Welcome to "Innovate, Iterate, Impact" ft. Co-Founder of AdaptTrack, Samuel Taggard. This is a podcast exploring the transformative journey of entrepreneurship through the lens of academic learning and real-world insights. Join Shivani Vyas, a Duke University student studying Financial Economics and Entrepreneurship, as she reflects on key lessons from the course I&E 352: Strategies for Innovation and Entrepreneurship, taught by Professor Shep Moyle. </p><p>In this episode, Shivani dives into the art of understanding customer needs, building scalable solutions, and leveraging data-driven strategies to solve meaningful problems. Featuring insights from Duke alumni and entrepreneur Samuel Taggard, listeners will...

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  The Rare Disorder Podcast

  40. Meet an Expert: Wes Michael, President at Rare Patient Voice

  Jun 18, 202230 minS0

  <p>Show Notes:</p> <p>In this episode, I chat with Wes Michael, President at Rare Patient Voice.</p> <p>Wes Michael, President and Founder of Rare Patient Voice, has been involved in rare and orphan diseases since 1998, interviewing and surveying patients, caregivers, physicians, nurses and advocacy leaders. Wes has more than 40 years experience in marketing research, and more than 20 years in healthcare marketing research.</p> <p>Rare Patient Voice, LLC provides patients and caregivers with rare diseases an opportunity to voice their opinions through surveys and interviews to improve medical products and services.</p> <p>While Rare Patient Voice...

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  The Rare Disorder Podcast

  39. What's to Come + Meet an Expert: Ben LeNail, Healthcare Investor & Consultant

  May 21, 202254 minS0

  <p>Show Notes:</p> <p>In this episode, I chat with Ben LeNail, Healthcare Investor & Consultant. </p> <p>Ben Lenail, based in Palo Alto CA, has consulted with biotech companies such as Minoryx Therapeutics, Autobahn Therapeutics, and Deep Genomics. Ben is an investor in 15 early-stage healthcare companies with HealthTech Capital. He is a mentor with the Chan Zuckerberg Initiative; and serves on the Board of ALD Connect and the Advisory Board of the UCSF Center for Vulnerable Populations.</p> <p>Ben has worked in high-tech in Silicon Valley for 30+ years. He’s a graduate of the University of Washington in Seatt...

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  Episode #38

  38. GA RDAC Update + Meet an Expert: Dr. Terry Jo Bichell, Founder & Director at COMBINEDBrain

  Feb 12, 202249 minS1

  <p>Show Notes:</p> <p>In this episode, I chat with Dr. Terry Jo Bichell, Founder & Director at COMBINEDBrain. </p> <p>Terry Jo Bichell worked as a documentary filmmaker in the early days of videotape, then became a public health nurse-midwife after filming a difficult birth in West Africa. When her youngest child, Lou, was diagnosed with Angelman syndrome, she switched from midwifery to clinical research on Angelman syndrome. Eventually, she went back to school to earn a PhD in neuroscience from Vanderbilt University in an effort to find treatments for her son. Along the way, she studied gene-environment interactions i...

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