Best Shivani Vyas Podcasts (2024)

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40. Meet an Expert: Wes Michael, President at Rare Patient Voice 30:10

2y ago30:10

30:10

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 resear…

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39. What's to Come + Meet an Expert: Ben LeNail, Healthcare Investor & Consultant 54:12

2y ago54:12

54:12

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 Zuckerb…

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38. GA RDAC Update + Meet an Expert: Dr. Terry Jo Bichell, Founder & Director at COMBINEDBrain 49:23

2y ago49:23

49:23

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 switc…

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37. Rare Disease Week + Meet a Fighter: Daniel Dry Dock Shockley, Retired Navy & 10-year Hereditary Colon Cancer Warrior 53:19

2y ago53:19

53:19

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…

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36. Welcome Back + Meet an Expert: Beth Nguyen, Founder at Rare Strides & GA NORD Ambassador 49:54

2+ y ago49:54

49:54

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…

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35. Meet an Expert: The Rare Disorder Podcast X Cure Rare Disease ft. Rich Horgan, Founder & President 17:10

2+ y ago17:10

17:10

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 …

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34. Meet a Fighter: Partial Trisomy Of 8q ft. Saida Mahoney 12:57

2+ y ago12:57

12:57

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…

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33. Meet a Partner: The Rare Disorder Podcast X Ella Balasa, Patient Advocate, Speaker, and Consultant 42:11

2+ y ago42:11

42:11

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 …

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32. Meet an Expert: The Rare Disorder Podcast X Patients Rising ft. Terry Wilcox, CEO 25:35

2+ y ago25:35

25:35

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…

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31. Meet a Fighter: Familial Adenomatous Polyposis & Short Bowel Syndrome ft. Jenny Jones 20:18

2+ y ago20:18

20:18

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 s…

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30. Meet an Expert: The Rare Disorder Podcast X Global Genes ft. Parvathy Krishnan, Foundation Alliance Manager 26:34

2+ y ago26:34

26:34

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 res…

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29. Meet a Partner: The Rare Disorder Podcast X YARR ft. Courtney Felle, Patient Engagement Fellow 28:02

2+ y ago28:02

28:02

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 th…

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28. Meet an Expert: The Rare Disorder Podcast X Georgia Bio ft. Maria Thacker-Goethe, CEO 18:38

2+ y ago18:38

18:38

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 bioscie…

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27. Meet an Expert: The Rare Disorder Podcast X Dr. Sarah McCool 16:45

2+ y ago16:45

16:45

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. …

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26. Meet an Expert: The Rare Disorder Podcast X Dr. Monkol Lek 52:15

2+ y ago52:15

52:15

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 indivi…

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25. Meet an Expert: The Rare Disorder Podcast X Rare Disease Innovation Institute ft. Tara Britt, CEO 26:00

2+ y ago26:00

26:00

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…

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24. Meet a Partner: The Rare Disorder Podcast X R is for Rare ft. Annie Watson, Host 50:55

2+ y ago50:55

50:55

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 …

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23. Meet a Partner: The Rare Disorder Podcast X Our Odyssey ft. Anna Laurent, Head of Programs 35:11

2+ y ago35:11

35:11

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 platfo…

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22. Meet a Partner: The Rare Disorder Podcast X Emory University JScreen ft. Melanie Hardy, Genetic Counselor 47:28

2+ y ago47:28

47:28

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 c…

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21. Meet a Fighter: Freidreich's Ataxia ft. Hasitha Illa 19:20

2+ y ago19:20

19:20

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 coo…

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20. Meet a Partner: The Rare Disorder Podcast X AllStripes ft. Erin Smith, Patient Engagement Manager 19:13

2+ y ago19:13

19:13

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 wi…

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19. Meet a Fighter: SLC6A1 ft. Amber & Maxwell Freed 22:16

2+ y ago22:16

22:16

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…

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18. Meet a Fighter: Ehlers-Danlos Syndrome ft. Laura Romano 20:33

3y ago20:33

20:33

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 li…

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17. Meet a Partner: The Rare Disorder Podcast X The Disorder Channel ft. Daniel DeFabio, Co-Founder 21:31

3y ago21:31

21:31

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 …

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16. Meet a Fighter: Batten Disease ft. Ali & Joshua Glover 13:37

3y ago13:37

13:37

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 inspirin…

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15. Meet a Fighter: Urea Cycle Disorder ft. Lynzi Russell 10:49

3y ago10:49

10:49

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 diagnose…

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14. Meet a Fighter: Thyroid Cancer ft. Carly Flumer 14:06

3y ago14:06

14:06

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 Administrat…

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13. Meet a Fighter: Leber Congenital Amaurosis ft. Melissa & Timothy Gagyi 11:35

3y ago11:35

11:35

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! --- Support this podcast: https://podcasters.spotify.com/pod/show/theraredisorderpodcast/support

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12. Meet a Fighter: A Different Narcolepsy Story ft. Lindsey Kizer 16:27

3y ago16:27

16:27

In this episode, I interview Lindsey Kizer, a fighter of Narcolepsy. 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 al…

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11. Meet a Fighter: "Polygenic Mutational Syndrome of Methylations" ft. Robin Powers 26:08

3y ago26:08

26:08

In this Podcast, I interview Robin, who is a fighter of a rare Polygenic Disease, "Polygenic Mutational Syndrome of Methylations." Learn about this rare condition, and hear her story! --- Support this podcast: https://podcasters.spotify.com/pod/show/theraredisorderpodcast/support

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10. Meet a Fighter: Generalized Lymphatic Anomaly ft. Leeya Alperin 15:52

3y ago15:52

15:52

In this episode, I interview Leeya, who is a fighter of Generalized Lymphatic Anomaly. Leeya is a honest person who at 20 years old, has been through a lot in 5 years. At 15 years old, she went down the path to find out what was wrong. Leeya was diagnosed with Generalized Lymphatic Anomaly (GLA) during the first semester of sophomore year of high s…

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9. Meet a Fighter: Short Bowel Syndrome + Intestinal Transplant (Medical PTSD BONUS) ft. Emily Parks 17:27

3y ago17:27

17:27

In this episode, I interview Emily, who is a fighter of Short Bowel Syndrome and Intestinal Transplant. Emily Parks is a chronically ill young professional based out of the Washington D.C. area working in behavioral health and patient advocacy. Having been diagnosed with short bowel syndrome in infancy and unable to absorb nutrition orally, she was…

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8. Meet a Fighter: Multiple Hereditary Exostoses ft. Marie Dagenais Lewis 16:00

3y ago16:00

16:00

In this episode, I interview Marie, who is a fighter of Multiple Hereditary Exostoses. Marie D.L. is an artist, motivational speaker, journalist, digital creator, and Patient Advocate Leader that has been in the media for almost a decade, and uses her skills and expertise to help others grow their advocacy or organizations. She is the founder of R…

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7. Meet a Fighter: Dysgraphia ft. Rifa Rafiq Juvale 10:49

3y ago10:49

10:49

In this Podcast, I interview Rifa, who is a fighter of Dysgraphia. Learn about this rare condition, and hear her story! Rifa is an avid food blogger, a finance enthusiast, and a rare disease advocate. --- Support this podcast: https://podcasters.spotify.com/pod/show/theraredisorderpodcast/support

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6. Meet a Fighter: CLOVES Syndrome ft. Lindsey Johnson Edwards 20:39

3y ago20:39

20:39

In this episode, I interview Lindsey, who is a fighter of CLOVES Syndrome. Lindsey is a 26 year old CLOVES patient that was initially diagnosed with Klippel Trenaunay Syndrome, another PROS condition. She currently lives in Dallas and is finishing up her Master’s degree in theology. Her interest in theology of suffering and flourishing is rooted in…

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5. Meet a Fighter: Cowden Syndrome ft. David Ross 12:07

3y ago12:07

12:07

In this episode, I interview David, who is a fighter of Cowden Syndrome. David Ross is a patient advocate and rare disease male mental mental health collaborator. David's activism began in 2017 when he was diagnosed with a rare disease called Cowden Syndrome due to being given a letter from his mother about getting tested before she passed away due…

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4. Meet a Fighter: Hyperacusis ft. Jemma Rosewater 17:19

3y ago17:19

17:19

In this episode, I interview Jemma, who is a fighter of Hyperacusis. Jemma is 17. She has lived with hyperacusis since she was six years old. Jemma also has several other medical conditions, including being legally blind. Growing up, Jemma’s childhood has been very different from most kids. She has been unable to attend social events, go to the sto…

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3. Meet a Fighter: 2q37 Deletion Syndrome ft. Megan Freeman 23:04

3y ago23:04

23:04

In this episode, I interview Megan, who is a fighter of 2q37 Deletion Syndrome. Megan Freeman started her rare disease journey when she was diagnosed with one at 16, dealing with all of the emotions that come along with having a rare disease and trying to come to terms with it to the best that she can. A little over two years ago, she got introduce…

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2. Meet a Fighter: Narcolepsy ft. Tara O' Connor 11:44

3y ago11:44

11:44

In this episode, I interview Tara, who is a fighter of Narcolepsy Type 2. Tara O'Connor is a volunteer EMT and a firefighter. She is also a full time student in the electroneurodiagnostic technology program. Tara is an auntie and a dog mama as well. She lives with Narcolepsy Type 2 - she was officially diagnosed in 2019, but had many symptoms for 2…

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1. Meet a Fighter: Idiopathic Intracranial Hypertension ft. Jen Roman 15:53

3y ago15:53

15:53

In this episode, I chat with Jen Roman, who is a fighter of Idiopathic Intracranial Hypertension. Jen Roman is a 27 year old living with Idiopathic Intracranial Hypertension & Behçets Disease. Instilled with a classic sense of Jersey-grit and a passion for helping others, she was a firefighter/EMT prior to her diagnosis and subsequent disability. A…

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Welcome to The Rare Disorder Podcast! 0:59

4y ago0:59

0:59

Some background of what this Podcast will be about! If you have any questions or concerns, please do not hesitate to reach out to me through theraredisorderpodcast@gmail.com or my Instagram @therdpodcast :)--- Support this podcast: https://podcasters.spotify.com/pod/show/theraredisorderpodcast/support…

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