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PODCAST

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

science natural sciences

All Episodes

00:02:58

Leading Through Stillness: A Summer Abroad

The Rare Disorder Podcast ·

2025/08/24

This episode isn’t about rare disease, advocacy, or biotech—at least not directly. It’s different. It’s slower. It’s personal.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.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

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00:17:09

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

The Rare Disorder Podcast ·

2024/12/09

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. In this episode, Shivani dives into the art

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00:30:10

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

The Rare Disorder Podcast ·

2022/06/18

Show Notes:In this episode, I chat with Wes Michael, President at Rare Patient Voice. 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. Rare Patient Voice, LLC provides patients and caregivers with rare diseases an opportunity to

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00:54:12

39. What's to Come + Meet an Expert: Ben LeNail,...

The Rare Disorder Podcast ·

2022/05/21

Show Notes: In this episode, I chat with Ben LeNail, Healthcare Investor & Consultant. 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 ChanZuckerberg Initiative; and serves on the Board of ALDConnect and the Advisory Board of the UCSF Center for Vulnerable Populations. Ben has worked in high-tech

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00:49:23

38. GA RDAC Update + Meet an Expert: Dr. Terry Jo...

The Rare Disorder Podcast ·

2022/02/12

Show Notes: In this episode, I chat with Dr. Terry Jo Bichell, Founder & Director at COMBINEDBrain. 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

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00:53:19

37. Rare Disease Week + Meet a Fighter: Daniel Dry...

The Rare Disorder Podcast ·

2022/01/29

Show Notes: In this episode, I chat with Daniel Dry Dock Shockley, a retired Navy, a veteran, and a 10 year hereditary colon cancer warrior. Daniel serves as a member of the University of Michigan Genetic Hereditary Testing (Might) Advisory Board and of the University of Texas Health Center, San Antonio, Texas, where he does live-case presentations for the Genetics in GI Malignancy multidisciplinary annual conferences. Daniel says that his purpose is to educate the world about Attenuated Familial

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00:49:54

36. Welcome Back + Meet an Expert: Beth Nguyen,...

The Rare Disorder Podcast ·

2022/01/22

The episode we've all been waiting for, and it's finally here! In this episode, I'm so honored to chat with Beth Nguyen. Beth is the Managing Director; Founding Partner, and President of Rare STRIDES. Beth is a seasoned registered nurse with a diverse background in critical care, transplant, and emergency room; Honored Atlanta AJC Nurse of the Year Nominee three years consecutively for excellence in bedside care; Serves as the volunteer Georgia Ambassador for the National Organization for Rare

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00:17:10

35. Meet an Expert: The Rare Disorder Podcast X Cure...

The Rare Disorder Podcast ·

2021/11/21

In this episode, I chat with Rich Horgan, the Founder and President of Cure Rare Disease. Cure Rare Disease is developing custom therapeutics that are as unique to the individuals they are meant to treat. Their mission is to offer effective, life-saving treatments developed through collaborations with world-renowned researchers and clinicians, and in partnership with our generous donors. Their customized therapeutics are designed specifically for the men and women who continue to fight for their

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00:12:57

34. Meet a Fighter: Partial Trisomy Of 8q ft. Saida...

The Rare Disorder Podcast ·

2021/11/13

In this episode, I chat with Saida Mahoney, a fighter of Partial Trisomy Of 8q. Saida Luvenia Mahoney is 25 years old and lives in Oakland, California. She is an author and a proud student at Modesto Junior College, San Joaquin Delta College, and Merced College. Saida is a performing arts major and creates music, does dance, and performs in theatre. She also does recording arts, songwriting, and acting. Saida is a Pageant Queen and was crowned 2021 California Miss Amazing Queen and was also a

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00:42:11

33. Meet a Partner: The Rare Disorder Podcast X Ella...

The Rare Disorder Podcast ·

2021/11/05

In this episode, I chat with Ella Balasa, a Patient Advocate, Speaker, and Consultant. Ella is passionate about amplifying the patient voice in healthcare. Having a background in biology, Ella has experienced both sides of the research spectrum - as a patient and a scientist. Examining antibiotic resistant bacteria in the environment, which isthesame bacteria thatthrive in the lungs of those with CF, her work in the lab intersected with her health. This fueled Ella's interest in involving herself in

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00:25:35

32. Meet an Expert: The Rare Disorder Podcast X...

The Rare Disorder Podcast ·

2021/10/30

In this episode, I chat with Terry Wilcox, the Founder and Executive Director of Patients Rising and Patients Rising Now. Formed in 2015 as a 501(c)3, Patients Rising has developed a significant following of over 110,000 patients and caregivers and has guided more than 25,000 of them on their journeys to advocate for themselves and their loved ones to get the care and treatments they need to live a fulfilling life. Patients Rising Now is a national nonprofit organization dedicated to advocating for

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00:20:18

31. Meet a Fighter: Familial Adenomatous Polyposis &...

The Rare Disorder Podcast ·

2021/10/24

In this episode, I interview Jenny Jones, a fighter of Familial Adenomatous Polyposis and Short Bowel Syndrome. Jenny was diagnosed with the rare, hereditary colon cancer syndrome Familial Adenomatous Polyposis at age 8 and had her first surgery to remove her colon at age 9. After experiencing life-threatening complications, Jenny required 4 more surgeries that year and developed another rare disease - Short Bowel Syndrome as a result. She lived with an ileostomy for 6 years before having it

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00:26:34

30. Meet an Expert: The Rare Disorder Podcast X...

The Rare Disorder Podcast ·

2021/10/23

In this episode, I chat with Parvathy Krishnan, a rare mom and the Foundation Alliance Manager at Global Genes. Global Genes provides hope for the more than 400 million people affected by rare disease around the globe. They fulfill their mission by helping patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government, and other stakeholders, share data and experiences, stand up, stand out, and become effective advocates on

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00:28:02

29. Meet a Partner: The Rare Disorder Podcast X YARR...

The Rare Disorder Podcast ·

2021/10/18

In this episode, I chat with Courtney Felle, a Patient Engagement Fellow at EveryLife Foundation for Rare Diseases. The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures. The Young Adult Representatives of RDLA (YARR) are a highly motivated

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00:18:38

28. Meet an Expert: The Rare Disorder Podcast X...

The Rare Disorder Podcast ·

2021/10/07

In this episode, I chat with Maria Thacker-Goethe, the CEO of Georgia Bio. Maria Thacker-Goethe has more than 13 years of experience in non-profit management and development. She was appointed president and CEO for Georgia Bio and the Georgia BioEd Institute in February 2019. Maria has helped build the organization into one of the top state bioscience and medtech associations through her community outreach and engagement, member development, and leadership on various special projects and programs to

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00:16:45

27. Meet an Expert: The Rare Disorder Podcast X Dr....

The Rare Disorder Podcast ·

2021/10/03

In this episode, I chat with Dr. Sarah McCool, who is aClinicalAssociate Professor and Director of Undergraduate Programs at the School of Public Health at Georgia State University. In this podcast, Dr. McCool discusses various projects she has completed, causes she is passionate about, her extensive background and experience, and much more! Dr. McCool has worked in global health in various capacities since 2010. She most recently worked to support a United States Agency for International

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00:52:15

26. Meet an Expert: The Rare Disorder Podcast X Dr....

The Rare Disorder Podcast ·

2021/09/15

In this episode, I chat with Dr. Monkol Lek, who is an assistant professor of genetics at Yale University, and an avid researcher with his own established lab, the Lek Lab, at Yale Medical School. He is also part of the research team at Cure Rare Disease, an organization with a mission to develop custom therapeutics that are as unique to the individuals they are meant to treat.In this podcast, Dr. Lek discusses what piqued his interest in rare disease research, his extensive background and

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00:26:00

25. Meet an Expert: The Rare Disorder Podcast X Rare...

The Rare Disorder Podcast ·

2021/09/11

In this episode, I chat with Tara Britt, who is the Associate Chair of the North Carolina Rare Disease Advisory Council and Founder and President of the Rare Disease Innovations Institute. Rare Disease Innovations Institute is a global non-profit focused on educating, engaging and equipping the rare disease community. Through policy, tools and data they achieve a higher quality of life, accelerating diagnosis and enabling access and treatment.Tara currently serves as Associate Chair of the North

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00:50:55

24. Meet a Partner: The Rare Disorder Podcast X R is...

The Rare Disorder Podcast ·

2021/09/10

In this episode, I chat with Annie Watson, a high school student, aspiring journalist and podcaster who has a rare sleep disorder called narcolepsy. She was diagnosed at 6 years old, and finally stepped into the rare disease community as a freshman in high school. She has been involved with Narcolepsy Network since 2018, and started her podcast, R is for Rare, in January 2021. She writes for her high school newspaper, works on set construction for her high school musicals, and is hoping to study

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00:35:11

23. Meet a Partner: The Rare Disorder Podcast X Our...

The Rare Disorder Podcast ·

2021/09/08

In this episode, I chat with Anna Laurent, who is the Head of Programs and Initiatives at Our Odyssey, an organization which aims to connect young adults impacted by a rare or chronic condition with social and emotional support in the hope of improving their quality of life. Our Odyssey's vision is to establish a national organization with a platform that empowers, educates, and connects young adults experiencing health challenges. After becoming involved in numerous patient advocacy organizations,

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43 results

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