Wait, How Do You Spell That? A Rare Disease Podcast

Patient Worthy
Wait, How Do You Spell That? A Rare Disease Podcast

Wait How Do You Spell That? is a rare disease podcast produced by Patient Worthy. We talk about issues affecting people rare and underdiagnosed conditions and interview advocates from across the community. We‘re definitely not doctors, and we can‘t give you medical advice. We‘re just here to chat and learn about the diseases that even doctors can‘t seem to spell. Check out the latest in rare disease news at PatientWorthy.com.

  1. 12/05/2024

    The Role of AI in Medicine feat. Joe Lennerz, BostonGene

    On this episode of the podcast, we discuss the role of artificial intelligence (AI) in medicine – specifically in the areas of analysis and diagnosis. Our guest, Dr. Joe Lennerz, is the chief scientific officer at BostonGene, an American clinical technology company that studies and produces new diagnostic tools in the areas of oncology and immunology.   https://bostongene.com/

    39 min

  2. 11/01/2024

    Spreading PAH Awareness featuring Steve Smith

    In this episode of the podcast we speak to Steve Smith, a patient advocate who is living with Pulmonary Arterial Hypertension (PAH), a rare and progressive condition characterized by narrowing of the blood vessels in the heart and lungs. Steve is a college administrator and avid theater participant who uses his PAH story to connect with others, believing that open communication is key to the patient experience.   Hear More About Steve and Other PAH patients: OutnumberPAH.com   Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: getinvolved.patientworthy.com Outnumber PAH | Living With Pulmonary Arterial Hypertension Together we can outnumber PAH. Find resources for living with pulmonary arterial hypertension and learn from the stories of people in the PAH community.

    26 min

  3. 10/04/2024

    All About Koolen de-Vries Syndrome, feat. Patient Advocate Ashley Point

    In this episode of the podcast we speak to Ashley Point, a patient advocate advocate whose son Davis was diagnosed with Koolen de-Vries Syndrome (KdVS) in 2016. She also serves as the president for both the Koolen de-Vries Syndrome Foundation and My Kool Brother, two non-profits that help to support families living with KdVS through advocacy, research and fundraising. Connect with Ashley Point: Koolen de-Vries Syndrome Foundation - My Kool Brother - "Davis Out of the Unknown" Documentary - Donate Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: getinvolved.patientworthy.com

    27 min

  4. 08/30/2024

    PKD and the Gift of Life, feat. Patient Advocate Valen Keefer

    In this episode of the podcast we speak to Valen Keefer, a professional speaker and patient advocate who was diagnosed with polycystic kidney disease (PKD) at age 10. Valen has faced a number of challenges in her journey, including a double organ transplant, and now inspires other PKD and chronic illness patients by sharing her story.  Connect with Valen Keefer: Website - Podcast -  Facebook - Instagram - X - LinkedIn Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02

    40 min

  5. 07/31/2024

    The Power of Resiliency, Feat. Multiple Myeloma Patient Advocate Keisha Hickson

    In this episode of the podcast, we speak to professional speaker and community advocate Keisha Hickson, who was diagnosed with multiple myeloma in 2016. That’s a rare form of cancer that develops in a type of white blood cell called a plasma cell. We discuss navigating a rare cancer diagnosis, adjusting to a new normal and the importance of resiliency. Connect with Keisha Hickson: Website - Instagram - LinkedIn Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02

    50 min

  6. 07/12/2024

    Epilepsy and Unmet Need, feat. The LGS Foundation and Ovid Therapeutics

    This episode's guests include Dr. Tracy Dixon-Salazar, Executive Director for the Lennox-Gastaut Syndrome (LGS) Foundation, as well as Meg Alexander, Chief Strategy Officer of Ovid Therapeutics. We discuss the treatment landscape for seizure disorders such as LGS and why further research and investment is crucial. Connect with the LGS Foundation: Website - Facebook - X (Twitter) - YouTube - Instagram - LinkedIn Connect with Ovid Therapeutics:  Website - LinkedIn - X (Twitter) - Facebook Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02

    43 min

  7. 06/28/2024

    Ewing Sarcoma and the New Normal, feat. Patient Advocate Brandi Benson

    In this episode of the podcast we sit down with Brandi Benson, a U.S. army veteran, author and patient advocate who was diagnosed with Ewing sarcoma in 2008. That’s one of rare family of cancers that develop in bones and the surrounding soft tissues. Brandi shares her story of resilience and survivorship, hoping to inspire others to share their cancer stories story as well.  Connect with Brandi: Website - Facebook - Instagram - YouTube - LinkedIn Check out Survivorship Today to hear the stories of other cancer survivors like Brandi. Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02

    20 min

  8. 06/14/2024

    50 Years of Supporting the TSC Community, feat. TSC Alliance President and CEO Kari Rosbeck

    In this episode of the podcast we sit down with Kari Rosbeck, the president and CEO of the TSC Alliance. That’s a nonprofit dedicated to supporting people living with tuberous sclerosis complex and also driving research into promising treatment, among many other things. The TSC Alliance is also celebrating its 50th anniversary this year! Connect with the TSC Alliance: Website - Facebook - Instagram - YouTube - TikTok - LinkedIn - Threads - Inspire Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02

    33 min
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Ratings & Reviews

5
out of 5
17 Ratings

About

Wait How Do You Spell That? is a rare disease podcast produced by Patient Worthy. We talk about issues affecting people rare and underdiagnosed conditions and interview advocates from across the community. We‘re definitely not doctors, and we can‘t give you medical advice. We‘re just here to chat and learn about the diseases that even doctors can‘t seem to spell. Check out the latest in rare disease news at PatientWorthy.com.

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