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The Rare Disorder Podcast

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A Science and Natural Sciences podcast featuring Shivani Vyas
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Episodes of The Rare Disorder Podcast

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, care
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 in
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 di
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 Boa
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
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, l
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, a
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 spectru
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 caregiver
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 surger
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 missio
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 d
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
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 h
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 Ra
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-prof
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 fres
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 i
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 Depart
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 b
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
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 wi
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 pr
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 an
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 horren
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