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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

00:47:28

22. Meet a Partner: The Rare Disorder Podcast X Emory...

The Rare Disorder Podcast ·

2021/09/06

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+

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00:19:20

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

The Rare Disorder Podcast ·

2021/08/20

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 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

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00:19:13

20. Meet a Partner: The Rare Disorder Podcast X...

The Rare Disorder Podcast ·

2021/08/17

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

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00:22:16

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

The Rare Disorder Podcast ·

2021/07/29

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

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00:20:33

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

The Rare Disorder Podcast ·

2021/07/26

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

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00:21:31

17. Meet a Partner: The Rare Disorder Podcast X The...

The Rare Disorder Podcast ·

2021/07/16

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

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00:13:37

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

The Rare Disorder Podcast ·

2021/07/16

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,

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00:10:49

15. Meet a Fighter: Urea Cycle Disorder ft. Lynzi...

The Rare Disorder Podcast ·

2021/07/14

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

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00:14:06

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

The Rare Disorder Podcast ·

2021/07/12

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

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00:11:35

13. Meet a Fighter: Leber Congenital Amaurosis ft....

The Rare Disorder Podcast ·

2021/07/12

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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00:16:27

12. Meet a Fighter: A Different Narcolepsy Story ft....

The Rare Disorder Podcast ·

2021/07/10

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 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

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00:26:08

11. Meet a Fighter: "Polygenic Mutational Syndrome of...

The Rare Disorder Podcast ·

2021/07/10

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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00:15:52

10. Meet a Fighter: Generalized Lymphatic Anomaly ft....

The Rare Disorder Podcast ·

2021/07/06

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 school. Since then, her family and her have been on a crazy but incredibly rewarding journey. Rewarding in the fact that they love advocating and Leeya,

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00:17:27

9. Meet a Fighter: Short Bowel Syndrome + Intestinal...

The Rare Disorder Podcast ·

2021/07/04

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 dependent on Parenteral Nutrition until receiving an isolated small bowel transplant from MedStar Georgetown University Hospital. Combining her expertise

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00:16:00

8. Meet a Fighter: Multiple Hereditary Exostoses ft....

The Rare Disorder Podcast ·

2021/06/30

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.A.R.E. by Marie D.L. and the creator of The R.A.R.E. Community. Through R.A.R.E. and The R.A.R.E. Community, she seeks to empower and spread visual

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00:10:49

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

The Rare Disorder Podcast ·

2021/06/28

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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00:20:39

6. Meet a Fighter: CLOVES Syndrome ft. Lindsey...

The Rare Disorder Podcast ·

2021/06/25

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 her journey as rare disease patient with recurrent health complications and challenges. She’s an AllStripes ambassador and CLOVES Family Advisory Council

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00:12:07

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

The Rare Disorder Podcast ·

2021/06/24

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 to having the same condition. After a period of coming to terms with this he became committed to raising awareness and supporting others impacted by this

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00:17:19

4. Meet a Fighter: Hyperacusis ft. Jemma Rosewater

The Rare Disorder Podcast ·

2021/06/22

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 store or most public places, listen to music, wash dishes, go on vacation, or even take showers because the noise causes her extreme physical pain and

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00:23:04

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

The Rare Disorder Podcast ·

2021/06/13

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 introduced to rare disease advocacy when she met some people near and dear to her in the rare disease world. She has designed blank greeting cards with onions, to

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43 results

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