Wait, How Do You Spell That? A Rare Disease Podcast
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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 an...
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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...
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...
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....
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 progre...
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...
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...
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 201...
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,...
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 i...
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 pe...
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 lic...
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 pulmon...
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...
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 (...
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...
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...
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 oligodendrog...
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...
The Intersection of Motherhood and Chronic Illness, Feat. aHUS Patient Advocate Taylor Coffman
On this episode of the podcast, we discuss atypical hemolytic-uremic syndrome, also known as aHUS -- a rare disorder characterized by low levels of bl...
Going All In On Support, feat. Patient Advocates Kathi and Dave Herzog
In observance of Alzheimer's Disease Awareness month, we sit down with patient advocate Kathi Herzog -- who was diagnosed with moderate Alzheimer's ea...
Learn About NMOSD feat. Patient Advocates Dr. Maggie Kang and Nell Choi
In this episode of the podcast we discuss neuromyelitis optica spectrum disease (NMOSD), a rare autoimmune disease that effects central nervous system...
Building Equity in the Breast Cancer Community, feat. Jasmine Souers of the Missing Pink Breast Cancer Alliance
For Breast Cancer Awareness month, in this episode we're speaking with Jasmine Souers, the president and CEO of the Missing Pink Breast Cancer Allianc...
Von Hippel-Lindau Disease: Meet Patient Advocate Justin Corbin
Patient Worthy's award-winning podcast is back! In this episode, we discuss Von Hippel-Lindau Disease. That's a genetic condition that causes constant...
How to Support the Supporters, feat. The Courageous Parents Network
We speak to Jennifer and Chrissy from the Couraeous Parents Network, one of Patient Worthy's newest partners. CPN is a non-profit organization and edu...
Working Toward the Future, Feat. GACI Global and Inozyme Pharma
On today's episode, we sit down with two of the co-founders of GACI Global, a nonprofit organization centered around families affected by Generalized...
The IRSF: 40 Years of Making Connections
Thank you for sticking with us while we took an unexpected break! We now return to our regular schedule of helping to share the stories of the rare di...
The 2022 Living Rare, Living Stronger Patient and Family Forum
In this episode, we sit down with Tiffany Sammons and Pam Mace from our partners over at NORD to preview the upcoming Living Rare, Living Stronger Pat...
Getting the Support You Need, feat. Cancer Commons
In this episode, we speak with Shelley Frisbie and Dr. Kaumudi Bhawe of Cancer Commons, a non-profit dedicated to providing assistance to advanced can...
The Importance of Persistence, feat. Patient Advocate Nathan Ehrlich
In this episode, we speak with Patient Advocate Nathan Ehrlich about SAMD9L mutations and their connection to a range of conditions, including bone ma...
Forging a Path in Rare Disease Research, Feat. the Myrovlytis Trust
In this episode of the podcast, we meet with our partners at the Myrovlytis Trust to talk about their work in rare disease research.
Keep up wit...
Exciting Rare Disease Developments in the EU, feat. HAE Junior
Hello and Happy Rare Disease Day! This week, we discuss some exciting developments concerning rare disease awareness in the EU, specifically in the Cz...
Preview: Rare Disease Week 2022 feat. The EveryLife Foundation for Rare Diseases
Britta Dornan and Sarah Tompkins from the EveryLife Foundation for Rare Diseases join us to preview Rare Disease Week 2022. This important event runs...
Bridging the Challenges in Cell Therapies, feat. Dr. Brad Heller of Achieve Clinics
In this episode, we sit down with Dr. Brad Heller, the founder of Achieve Clinics, to discuss the potential of cell therapies, some of the current cha...
The Importance of Getting Involved, Feat. Friedreich‘s Ataxia Advocate Kyle Bryant
This week, we talk to patient advocate and FA ambassador for the Friedreich's ataxia Research Alliance, Kyle Bryant, about the importance of getting i...
The Potential of CAR T-Cell Therapy, Feat. Dr. Robyn Stacy-Humphries
In this episode, we sit down with Dr. Robyn Stacy-Humphries with Charlotte Radiology. She talks about her diagnosis of diffuse large B-cell lymphoma a...
Not Just Surviving, But Thriving With Pheo vs. Fabulous
In this episode, we speak with Miranda Edwards, the voice behind Pheo vs. Fabulous about her journey with pheochromocytoma. That's an ultra-rare endoc...
Hanging Onto Hope in the Face of AML
In this episode, we speak with Dave Cade, an acute myeloid leukemia patient who is in remission after an experimental treatment. We discuss keeping ho...
The Importance of Connection With Jordan‘s Guardian Angels
In this episode, we discuss an ultra-rare genetic condition with Carole Bakhos of Jordan's Guardian Angels. To find out more about Jordan's Syndrome a...
Awareness and Improvement: Discussing Narcolepsy With a Sleep Medicine Doctor
In this episode, we discuss narcolepsy and the results of a recent clinical trial investigating FT218 for efficacy in treating excessive daytime sleep...
A Lifetime of Research with Dr. Cannon of the Periodic Paralysis Association
In this episode, we discuss a condition called periodic paralysis with Dr. Steve Cannon, professor and chairman of the department of physiology at the...