Wait, How Do You Spell That? A Rare Disease Podcast
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S104E104 Redefining Cancer Treatment: Interview with Dr. Charles Link on Sync-T and the Future of Immunotherapy
Join host Bree Clare as she speaks with Dr. Charles Link, a pioneering oncologist and immunotherapy researcher who's spent decades reshaping the landscape of cancer medicine. In this episode, Dr.…
Finding Strength Together: Scott and Katie’s Journey with Advanced Kidney Cancer
This podcast episode is sponsored by AVEO Oncology. The product information in this podcast is intended only for US residents. This episode features a real patient and their care partner,…
Focus on the Rising with Lisa Batista
On today’s episode of ‘Wait, How Do You Spell That? A Rare Disease podcast brought to you by Patient Worthy. We are thrilled to share with you a story that is as powerful as it is inspiring. Our…
Navigating the Patient's Journey featuring Brenda Snow
Patient Worthy is humbled to speak to Brenda Snow, CEO and Founder of Snow Companies and now the bestselling author of 'Diagnosed: The Essential Guide to Navigating the Patient's Journey'. We discuss…
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…
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…
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…
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…
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…
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…
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…
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…
Helping Rare Parents Help Themselves, feat. Ronda Thorington, LPC
In this episode of the podcast we sit down with Ronda Thorington, the mother of child living with mixed connective tissue disease. Ronda is also a licensed professional counselor who specializes in…
IPF and the Importance of Clinical Trials, feat. Patient Advocate Murray Walz
In this episode of the podcast we sit down with Murray Walz, a patient advocate who was diagnosed with the progressive lung diseases idiopathic pulmonary fibrosis (IPF) in 2019. Murray discusses the…
The MS Poltergeist, feat. Patient Advocate Jennifer Angus
In this episode of the podcast we talk with Jennifer Angus, a patient advocate and para dressage competitor who was diagnosed with multiple sclerosis in 2014. Jennifer has long been involved with…
The Bespoke Gene Therapy Consortium's New Regulatory Playbook, feat. The Foundation for the National Institutes of Health and Taylor's Tale
In this episode of the podcast we talk with Drs. Julie Gerberding and Courtney Silverthorn from the Foundation for the National Institutes of Health (FNIH). They're bringing us updates on the Bespoke…
Hemophilia and Axel's Story, feat. Patient Advocate Kristina Robinson
In this episode of the podcast we talk with Kristina Robinson, a patient advocate and mother whose son, Axel, was diagnosed with hemophilia A when he was 10 months old. That’s a rare bleeding…
The Road to Resilience and Self-Advocacy, feat. Patient Advocate Kecia J.
This episode features Kecia Johnson, an author, music industry veteran and motivational speaker who was diagnosed with HIV/AIDS in her early 20s, and also with a rare form of stage-3 colorectal…
Rare Cancer, Finances and Families, feat. Tony Laudadio of the Tony Foundation
In this episode of the podcast, we speak with Tony Laudadio, an oncology patient advocate who was diagnosed with renal cell carcinoma and oligodendroglioma, a type of rare brain cancer. In the years…
The Unmet Need in Rare Disease, feat. Dr. Emil Kakkis of Ultragenyx
In this episode, we speak with Dr. Emil Kakkis, a physician and scientist who has spent more than 30 years helping to advance research, treatment and policy for rare disease patients. He is also the…
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Wait, How Do You Spell That? A Rare Disease Podcast has published 79 episodes since March 2020, covering topics in Health & Fitness.
Wait, How Do You Spell That? A Rare Disease Podcast is currently moderate with new episodes monthly. Average episode length is 27m.
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