Podcast · Tech & Science

The Rare Disorder Podcast

by Shivani Vyas · English · Tech & Science

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 affecte

New episodes: Weekly
Typical length: 22 min
Latest: 24 Aug 2025
Language: English

Latest episode

24 Aug 2025 · 3 min

Leading Through Stillness: A Summer Abroad

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 clarity. If you’ve been feeling burnt out, stuck, or unsure how to lead when you don’t have…

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Earlier episodes 29 most recent

9 Dec 2024 · 17 min
Innovate, Iterate, Impact: ft. Co-Founder of AdaptTrack
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 of understanding customer needs, building scalable solutions, and leveraging data-driven strategies…
18 Jun 2022 · 30 min
40. Meet an Expert: Wes Michael, President at Rare Patient Voice
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 voice their opinions through surveys and interviews to improve medical products and services.…
21 May 2022 · 54 min
39. What's to Come + Meet an Expert: Ben LeNail, Healthcare Investor & Consultant
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 Chan Zuckerberg Initiative; and serves on the Board of ALD Connect and the Advisory Board of the UCSF Center for Vulnerable Populations. Ben has worked in high-tech in Silicon Valley for 30+ years. He’s a graduate of the University of Washington in Seattle WA…
S1 · E38 · 12 Feb 2022 · 49 min
38. GA RDAC Update + Meet an Expert: Dr. Terry Jo Bichell, Founder & Director at COMBINEDBrain
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 University in an effort to find treatments for her son. Along the way, she studied gene-environment…
S1 · E37 · 29 Jan 2022 · 53 min
37. Rare Disease Week + Meet a Fighter: Daniel Dry Dock Shockley, Retired Navy & 10-year Hereditary Colon Cancer Warrior
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 Adenomatous Polyposis (AFAP) and continuing the legacy of Dr. Henry T. Lynch, who emphasized the…
S1 · E36 · 22 Jan 2022 · 50 min
36. Welcome Back + Meet an Expert: Beth Nguyen, Founder at Rare Strides & GA NORD Ambassador
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 Disorders; Led efforts to establish the Georgia Rare Disease Advisory Council; Leader of Annual…
S1 · E35 · 21 Nov 2021 · 17 min
35. Meet an Expert: The Rare Disorder Podcast X Cure Rare Disease ft. Rich Horgan, Founder & President
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 right to live long, full, healthy lives despite having been diagnosed with a rare genetic…
S1 · E34 · 13 Nov 2021 · 13 min
34. Meet a Fighter: Partial Trisomy Of 8q ft. Saida Mahoney
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 finalist at The Miss Amazing Nationals. In addition, she is a athlete for the Special Olympics,…
S1 · E33 · 5 Nov 2021 · 42 min
33. Meet a Partner: The Rare Disorder Podcast X Ella Balasa, Patient Advocate, Speaker, and Consultant
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 is the same bacteria that thrive 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 a research capacity on committees and advisory roles with organizations providing a…
S1 · E32 · 30 Oct 2021 · 26 min
32. Meet an Expert: The Rare Disorder Podcast X Patients Rising ft. Terry Wilcox, CEO
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 the rights of patients with chronic and life-threatening illnesses. We work at community,…
S1 · E31 · 24 Oct 2021 · 20 min
31. Meet a Fighter: Familial Adenomatous Polyposis & Short Bowel Syndrome ft. Jenny Jones
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 reversed into a Straight Pull Thru and again experienced life-threatening complications. Jenny has…
S1 · E30 · 23 Oct 2021 · 27 min
30. Meet an Expert: The Rare Disorder Podcast X Global Genes ft. Parvathy Krishnan, Foundation Alliance Manager
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 their own behalf. Parvathy Krishnan earned her MS from Rutgers University, NJ and her clinical…
S1 · E29 · 18 Oct 2021 · 28 min
29. Meet a Partner: The Rare Disorder Podcast X YARR ft. Courtney Felle, Patient Engagement Fellow
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 group of rare disease community members between 16 and 30 years old, including patient…
S1 · E28 · 7 Oct 2021 · 19 min
28. Meet an Expert: The Rare Disorder Podcast X Georgia Bio ft. Maria Thacker-Goethe, CEO
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 increase community connections and resources. Additionally, she had been responsible for…
S1 · E27 · 3 Oct 2021 · 17 min
27. Meet an Expert: The Rare Disorder Podcast X Dr. Sarah McCool
In this episode, I chat with Dr. Sarah McCool, who is a Clinical Associate 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 Development (USAID)- funded child protection/anti-trafficking project in Haiti. She has worked…
S1 · E26 · 15 Sep 2021 · 52 min
26. Meet an Expert: The Rare Disorder Podcast X Dr. Monkol Lek
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 experience, topics of interest, and much more! Dr. Lek received an undergraduate degree in Engineering…
S1 · E25 · 11 Sep 2021 · 26 min
25. Meet an Expert: The Rare Disorder Podcast X Rare Disease Innovation Institute ft. Tara Britt, CEO
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 Carolina Rare Disease Advisory Council and Network. The council was created as a result of…
S1 · E24 · 10 Sep 2021 · 51 min
24. Meet a Partner: The Rare Disorder Podcast X R is for Rare ft. Annie Watson, Host
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 journalism and political science in college next year. Listen to her podcast, and follow along on…
S1 · E23 · 8 Sep 2021 · 35 min
23. Meet a Partner: The Rare Disorder Podcast X Our Odyssey ft. Anna Laurent, Head of Programs
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, she found a lack of resources supporting young adults and this ignited her passion for…
S1 · E22 · 6 Sep 2021 · 47 min
22. Meet a Partner: The Rare Disorder Podcast X Emory University JScreen ft. Melanie Hardy, Genetic Counselor
In this episode, I chat with Ms. Hardy, a licensed, certified genetic counselor at JScreen, which is a national-nonprofit offering genetic testing and education. JScreen is a national non-profit public health initiative, based out of the Department of Human Genetics at Emory University, is now offering cancer genetic testing for BRCA and 60 other cancer susceptibility genes. These genes are associated with many types of cancer including breast, ovarian, colorectal, prostate, pancreatic and 30+ others. The test is accessible 24/7 to all 50 states via an at-home, saliva testing with telehealth…
S1 · E21 · 20 Aug 2021 · 19 min
21. Meet a Fighter: Freidreich's Ataxia ft. Hasitha Illa
In this episode, I interview Hasitha Illa, who is a fighter of Freidreich's Ataxia. Hasitha was diagnosed with a super rare disease called Friedreich's Ataxia. This is a genetic, progressive, neurodegenerative movement disorder, characterized by unsteady posture, frequent falling, and progressive difficulty of walking due to impaired ability to coordinate voluntary movements. This traumatic experience has made her into a stronger and a positive person. She loves to write and she is pretty confident on camera. So, she started a blog and a YouTube channel in order to spread awareness on…
S1 · E20 · 17 Aug 2021 · 19 min
20. Meet a Partner: The Rare Disorder Podcast X AllStripes ft. Erin Smith, Patient Engagement Manager
In this episode, I chat with Erin Smith, who is the Senior Patient Engagement Manager at AllStripes. Erin is responsible for running the ambassador program at AllStripes. She discusses what AllStripes does and its mission, ways patients can get involved and advocate for themselves through the ambassador program which she runs, her personal story with rare disease advocacy, and so much more! AllStripes’ mission is to unlock new treatments for people with rare disease. They are a medical data science company that empowers patients and communities to generate regulatory-ready evidence for drug…
S1 · E19 · 29 Jul 2021 · 22 min
19. Meet a Fighter: SLC6A1 ft. Amber & Maxwell Freed
In this episode, I interview Amber, mom of Maxwell, a child with SLC6A1. Amber Freed's 2 year-old son, Maxwell, has a rare genetic neurological disease called SLC6A1. Amber is on a mission to raise $4,000,000 to advance a clinical trial that will cure every child with this disorder and give Maxwell a chance at life. To date, she has raised close to $3,000,000. SLC6A1 is the 10th cause of autism, 6th cause of epilepsy, and plays a major role in psychiatric conditions. She wants to create an impact on a multitude of children. She has started Milestones for Maxwell to raise money towards this…
S1 · E20 · 26 Jul 2021 · 21 min
18. Meet a Fighter: Ehlers-Danlos Syndrome ft. Laura Romano
In this podcast, I interview Laura Romano, who is a fighter of multiple rare diseases! Laura is a 23-year-old recent graduate from Simmons University where they majored in Neuroscience. They are currently working as an assistant teacher in a preschool classroom and will begin a Master’s of Education in Early Childhood Education in January. Laura lives with Classical-like Ehlers Danlos Syndrome, Mast Cell Activation Syndrome, and Small Fiber Neuropathy. Laura has previously volunteered with the Ehlers Danlos Society and the Marfan Foundation. They are a member of the Young Adult…
S1 · E17 · 16 Jul 2021 · 22 min
17. Meet a Partner: The Rare Disorder Podcast X The Disorder Channel ft. Daniel DeFabio, Co-Founder
In this episode, I chat with Daniel DeFabio, a co-founder and co-producer of this film festival and rare awareness event, The Rare Disease Film Festival and The Disorder Channel which features speakers from industry, medical research centers and patient advocates. He also arranged for several private and public screening events around the world of selected films from our festival, often with speakers from our films. At the age of 12 months Daniel’s first child Lucas was diagnosed with the rare disease Menkes Syndrome. After adjusting his expectations of what raising a child might look like…
S1 · E16 · 16 Jul 2021 · 14 min
16. Meet a Fighter: Batten Disease ft. Ali & Joshua Glover
In this episode, I interview Ali, whose son, Joshua, is a young fighter of Batten Disease. Ali Glover is mum to Joshua who was diagnosed with Batten Disease CLN6 in 2020. Every day is a challenge to her family, with a child fighting this horrendous disease - she finds his courage and perseverance through everything particularly amazing and inspiring. Now, Ali has started a Facebook group for those who would like to follow along on Joshua's journey. Here, she shares, the ups, downs, raises awareness, and collects funds. Follow along on her and Joshua's advocacy journey! Facebook group:…
S1 · E15 · 14 Jul 2021 · 11 min
15. Meet a Fighter: Urea Cycle Disorder ft. Lynzi Russell
In this episode, I interview Lynzi, who is a fighter of Urea Cycle Disorder. Lindsey Kizer is a Carolina native from Belmont NC that loves to bake, listen to live music, spend time in her garden and with her husband and rescue pup. She was diagnosed with Narcolepsy at 29 after living with many of the symptoms for over 15 years. After being diagnosed she also was diagnosed with Fibromyalgia and Dysautonomi. She is now sharing her story to help raise awareness so that others do not have to go through the struggles she did. Keep up with her advocacy journey! Instagram:…
S1 · E14 · 12 Jul 2021 · 14 min
14. Meet a Fighter: Thyroid Cancer ft. Carly Flumer
In this episode, I interview Carly, who is a fighter of Thyroid Cancer. Carly Flumer was diagnosed with stage I papillary thyroid cancer at the age of 27 and then with refractory disease at the age of 31. She received her Master’s degree from Boston University in Health Communication and Bachelor’s from George Mason University in Health Administration and Policy. While being diagnosed with the “C” word at such a young age was a surprise, as it would be to anyone, she found strength, support, and inspiration in sharing her cancer journey on social media. As a result of her health outcome, she…
S1 · E13 · 12 Jul 2021 · 12 min
13. Meet a Fighter: Leber Congenital Amaurosis ft. Melissa & Timothy Gagyi
In this Podcast, I interview Melissa, whose son, Timothy, is a young fighter of Leber Congenital Amaurosis. Learn about this rare condition, and hear his story!

About The Rare Disorder Podcast

The Rare Disorder Podcast is a English tech & science podcast from Shivani Vyas. Melo plays each episode straight from the publisher's own feed — no ads added, no account needed — and remembers where you stopped, in this browser only.

Publisher: Shivani Vyas
Language: English
Category: Tech & Science
New episodes: Weekly
Typical length: 22 min
Latest episode: 24 Aug 2025
Feed: RSS — paste into any podcast app
Apple Podcasts: podcasts.apple.com/podcast/id1584861662
Rights: Shivani Vyas

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