The Rare Disorder Podcast

By Shivani Vyas

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Image by Shivani Vyas

Category: Natural Sciences

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Subscribers: 2
Reviews: 0
Episodes: 43

Description

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

Episode Date
Leading Through Stillness: A Summer Abroad
Aug 24, 2025
Innovate, Iterate, Impact: ft. Co-Founder of AdaptTrack
Dec 09, 2024
40. Meet an Expert: Wes Michael, President at Rare Patient Voice
Jun 18, 2022
39. What's to Come + Meet an Expert: Ben LeNail, Healthcare Investor & Consultant
May 21, 2022
38. GA RDAC Update + Meet an Expert: Dr. Terry Jo Bichell, Founder & Director at COMBINEDBrain
Feb 12, 2022
37. Rare Disease Week + Meet a Fighter: Daniel Dry Dock Shockley, Retired Navy & 10-year Hereditary Colon Cancer Warrior
Jan 29, 2022
36. Welcome Back + Meet an Expert: Beth Nguyen, Founder at Rare Strides & GA NORD Ambassador
Jan 22, 2022
35. Meet an Expert: The Rare Disorder Podcast X Cure Rare Disease ft. Rich Horgan, Founder & President
Nov 21, 2021
34. Meet a Fighter: Partial Trisomy Of 8q ft. Saida Mahoney
Nov 13, 2021
33. Meet a Partner: The Rare Disorder Podcast X Ella Balasa, Patient Advocate, Speaker, and Consultant
Nov 05, 2021
32. Meet an Expert: The Rare Disorder Podcast X Patients Rising ft. Terry Wilcox, CEO
Oct 30, 2021
31. Meet a Fighter: Familial Adenomatous Polyposis & Short Bowel Syndrome ft. Jenny Jones
Oct 24, 2021
30. Meet an Expert: The Rare Disorder Podcast X Global Genes ft. Parvathy Krishnan, Foundation Alliance Manager
Oct 23, 2021
29. Meet a Partner: The Rare Disorder Podcast X YARR ft. Courtney Felle, Patient Engagement Fellow
Oct 18, 2021
28. Meet an Expert: The Rare Disorder Podcast X Georgia Bio ft. Maria Thacker-Goethe, CEO
Oct 07, 2021
27. Meet an Expert: The Rare Disorder Podcast X Dr. Sarah McCool
Oct 03, 2021
26. Meet an Expert: The Rare Disorder Podcast X Dr. Monkol Lek
Sep 15, 2021
25. Meet an Expert: The Rare Disorder Podcast X Rare Disease Innovation Institute ft. Tara Britt, CEO
Sep 11, 2021
24. Meet a Partner: The Rare Disorder Podcast X R is for Rare ft. Annie Watson, Host
Sep 10, 2021
23. Meet a Partner: The Rare Disorder Podcast X Our Odyssey ft. Anna Laurent, Head of Programs
Sep 08, 2021
22. Meet a Partner: The Rare Disorder Podcast X Emory University JScreen ft. Melanie Hardy, Genetic Counselor
Sep 06, 2021
21. Meet a Fighter: Freidreich's Ataxia ft. Hasitha Illa
Aug 20, 2021
20. Meet a Partner: The Rare Disorder Podcast X AllStripes ft. Erin Smith, Patient Engagement Manager
Aug 17, 2021
19. Meet a Fighter: SLC6A1 ft. Amber & Maxwell Freed
Jul 29, 2021
18. Meet a Fighter: Ehlers-Danlos Syndrome ft. Laura Romano
Jul 26, 2021
17. Meet a Partner: The Rare Disorder Podcast X The Disorder Channel ft. Daniel DeFabio, Co-Founder
Jul 16, 2021
16. Meet a Fighter: Batten Disease ft. Ali & Joshua Glover
Jul 16, 2021
15. Meet a Fighter: Urea Cycle Disorder ft. Lynzi Russell
Jul 14, 2021
14. Meet a Fighter: Thyroid Cancer ft. Carly Flumer
Jul 12, 2021
13. Meet a Fighter: Leber Congenital Amaurosis ft. Melissa & Timothy Gagyi
Jul 12, 2021
12. Meet a Fighter: A Different Narcolepsy Story ft. Lindsey Kizer
Jul 10, 2021
11. Meet a Fighter: "Polygenic Mutational Syndrome of Methylations" ft. Robin Powers
Jul 10, 2021
10. Meet a Fighter: Generalized Lymphatic Anomaly ft. Leeya Alperin
Jul 06, 2021
9. Meet a Fighter: Short Bowel Syndrome + Intestinal Transplant (Medical PTSD BONUS) ft. Emily Parks
Jul 04, 2021
8. Meet a Fighter: Multiple Hereditary Exostoses ft. Marie Dagenais Lewis
Jun 30, 2021
7. Meet a Fighter: Dysgraphia ft. Rifa Rafiq Juvale
Jun 28, 2021
6. Meet a Fighter: CLOVES Syndrome ft. Lindsey Johnson Edwards
Jun 25, 2021
5. Meet a Fighter: Cowden Syndrome ft. David Ross
Jun 24, 2021
4. Meet a Fighter: Hyperacusis ft. Jemma Rosewater
Jun 22, 2021
3. Meet a Fighter: 2q37 Deletion Syndrome ft. Megan Freeman
Jun 13, 2021
2. Meet a Fighter: Narcolepsy ft. Tara O' Connor
Jun 04, 2021
1. Meet a Fighter: Idiopathic Intracranial Hypertension ft. Jen Roman
May 22, 2021
Welcome to The Rare Disorder Podcast!
Jun 09, 2020