Wait, How Do You Spell That? A Rare Disease Podcast
By Patient Worthy
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Category: Health & Fitness
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Subscribers: 6
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Episodes: 79
Description
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.
| Episode | Date |
|---|---|
|
Redefining Cancer Treatment: Interview with Dr. Charles Link on Sync-T and the Future of Immunotherapy
|
Mar 02, 2026 |
|
Finding Strength Together: Scott and Katie’s Journey with Advanced Kidney Cancer
|
Feb 24, 2026 |
|
Focus on the Rising with Lisa Batista
|
Aug 30, 2025 |
|
Navigating the Patient's Journey featuring Brenda Snow
|
Apr 22, 2025 |
|
The Role of AI in Medicine feat. Joe Lennerz, BostonGene
|
Dec 05, 2024 |
|
Spreading PAH Awareness featuring Steve Smith
|
Nov 01, 2024 |
|
All About Koolen de-Vries Syndrome, feat. Patient Advocate Ashley Point
|
Oct 04, 2024 |
|
PKD and the Gift of Life, feat. Patient Advocate Valen Keefer
|
Aug 30, 2024 |
|
The Power of Resiliency, Feat. Multiple Myeloma Patient Advocate Keisha Hickson
|
Jul 31, 2024 |
|
Epilepsy and Unmet Need, feat. The LGS Foundation and Ovid Therapeutics
|
Jul 12, 2024 |
|
Ewing Sarcoma and the New Normal, feat. Patient Advocate Brandi Benson
|
Jun 28, 2024 |
|
50 Years of Supporting the TSC Community, feat. TSC Alliance President and CEO Kari Rosbeck
|
Jun 14, 2024 |
|
Helping Rare Parents Help Themselves, feat. Ronda Thorington, LPC
|
May 31, 2024 |
|
IPF and the Importance of Clinical Trials, feat. Patient Advocate Murray Walz
|
May 20, 2024 |
|
The MS Poltergeist, feat. Patient Advocate Jennifer Angus
|
Apr 26, 2024 |
|
The Bespoke Gene Therapy Consortium's New Regulatory Playbook, feat. The Foundation for the National Institutes of Health and Taylor's Tale
|
Apr 12, 2024 |
|
Hemophilia and Axel's Story, feat. Patient Advocate Kristina Robinson
|
Mar 22, 2024 |
|
The Road to Resilience and Self-Advocacy, feat. Patient Advocate Kecia J.
|
Mar 15, 2024 |
|
Rare Cancer, Finances and Families, feat. Tony Laudadio of the Tony Foundation
|
Feb 23, 2024 |
|
The Unmet Need in Rare Disease, feat. Dr. Emil Kakkis of Ultragenyx
|
Feb 09, 2024 |
|
The Intersection of Motherhood and Chronic Illness, Feat. aHUS Patient Advocate Taylor Coffman
|
Jan 19, 2024 |
|
Going All In On Support, feat. Patient Advocates Kathi and Dave Herzog
|
Nov 27, 2023 |
|
Learn About NMOSD feat. Patient Advocates Dr. Maggie Kang and Nell Choi
|
Nov 10, 2023 |
|
Building Equity in the Breast Cancer Community, feat. Jasmine Souers of the Missing Pink Breast Cancer Alliance
|
Oct 26, 2023 |
|
Von Hippel-Lindau Disease: Meet Patient Advocate Justin Corbin
|
Oct 13, 2023 |
|
How to Support the Supporters, feat. The Courageous Parents Network
|
Dec 19, 2022 |
|
Working Toward the Future, Feat. GACI Global and Inozyme Pharma
|
Sep 30, 2022 |
|
The IRSF: 40 Years of Making Connections
|
Sep 02, 2022 |
|
The 2022 Living Rare, Living Stronger Patient and Family Forum
|
Jun 21, 2022 |
|
Getting the Support You Need, feat. Cancer Commons
|
May 27, 2022 |
|
The Importance of Persistence, feat. Patient Advocate Nathan Ehrlich
|
May 05, 2022 |
|
Forging a Path in Rare Disease Research, Feat. the Myrovlytis Trust
|
Mar 31, 2022 |
|
Exciting Rare Disease Developments in the EU, feat. HAE Junior
|
Feb 28, 2022 |
|
Preview: Rare Disease Week 2022 feat. The EveryLife Foundation for Rare Diseases
|
Feb 11, 2022 |
|
Bridging the Challenges in Cell Therapies, feat. Dr. Brad Heller of Achieve Clinics
|
Jan 21, 2022 |
|
The Importance of Getting Involved, Feat. Friedreich‘s Ataxia Advocate Kyle Bryant
|
Dec 21, 2021 |
|
The Potential of CAR T-Cell Therapy, Feat. Dr. Robyn Stacy-Humphries
|
Dec 15, 2021 |
|
Not Just Surviving, But Thriving With Pheo vs. Fabulous
|
Nov 12, 2021 |
|
Hanging Onto Hope in the Face of AML
|
Oct 29, 2021 |
|
The Importance of Connection With Jordan‘s Guardian Angels
|
Oct 21, 2021 |
|
Awareness and Improvement: Discussing Narcolepsy With a Sleep Medicine Doctor
|
Sep 27, 2021 |
|
A Lifetime of Research with Dr. Cannon of the Periodic Paralysis Association
|
Sep 22, 2021 |
|
Building the Connections with the SYNGAP Research Fund
|
Aug 31, 2021 |
|
Making the "Invisible," Visible With Journalist Karina Sturm
|
Jul 30, 2021 |
|
Cure Mito Foundation: The Importance of Patient Registries
|
Jul 16, 2021 |
|
37 Years of Research With the TSC Alliance
|
Jul 02, 2021 |
|
Staying Strong and Pressing On With the Alagille Syndrome Alliance
|
Jun 17, 2021 |
|
Living Rare, Living Stronger: NORD Patient and Family Forum
|
Jun 04, 2021 |
|
Author Tom Seaman Talks About Adapting to Adversity
|
May 28, 2021 |
|
Sophie's Hope and GSD1B
|
May 10, 2021 |
|
Pemphigus and Pemphigoid: Talking Rare Disease Dermatology
|
Apr 23, 2021 |
|
The 2021RAREis Scholarship
|
Apr 09, 2021 |
|
Narcolepsy: A 20-Year Journey to Diagnosis
|
Apr 02, 2021 |
|
Sharing Patient Voices With Elephants and Tea
|
Mar 12, 2021 |
|
The Economic Burden of Rare Disease
|
Feb 26, 2021 |
|
Helping Patients Achieve Their Potential With HAE Junior
|
Feb 15, 2021 |
|
Fighting for Access and Awareness With Dreamsickle Kids
|
Feb 05, 2021 |
|
An Editor Shares Her Cystic Fibrosis Story
|
Jan 29, 2021 |
|
20 Years of Connections: The Glanzmann's Research Foundation
|
Dec 04, 2020 |
|
No Day Wasted: The Adam Settle Story
|
Nov 20, 2020 |
|
Ilana's New Journey and Ehlers-Danlos Syndrome
|
Nov 06, 2020 |
|
Danny's Dose: Prepare for the Worst and Work Toward the Best
|
Oct 16, 2020 |
|
Rare Reflections: How Illustrator J.G. Jones is Bringing Attention to MPN Patients Through Art
|
Oct 09, 2020 |
|
Rarest of the Rare: Neena Nizar and the Jansen's Foundation
|
Sep 11, 2020 |
|
A Disease Advocate Gets Personal About Diagnosis and Treatment Denials
|
Aug 21, 2020 |
|
Cushing's Syndrome and Service Dogs: Discussing Disease Advocacy With Amy Dahm
|
Aug 13, 2020 |
|
Discussing Diagnosis and Access With the EveryLife Foundation for Rare Diseases
|
Jul 17, 2020 |
|
Decentralizing Clinical Trials with Harsha Rajasimha from Jeeva Informatic Systems
|
Jul 07, 2020 |
|
Why the healthcare system needs to talk about black health disparities
|
Jun 11, 2020 |
|
"I found out I had Huntington's Disease through a letter in the mail" talking about HD, Ostenecrosis, and the future with Antonio Maltese
|
May 22, 2020 |
|
Meditation's relationship with pain, anxiety, and trying not to be sanctamonious
|
May 12, 2020 |
|
Putting the pieces back together with Lynzi Russell from the Connecting Families with Urea Cycle Disorder Foundation
|
May 04, 2020 |
|
Young adults changing rare disease legislation, ft. Dan Pezatta from YARR
|
Apr 29, 2020 |
|
When your son has the sixth SYNGAP-1 diagnosis in the world- Ft. Monica Weldon from Bridge the Gap
|
Apr 17, 2020 |
|
You're not failing at self-care: staying okay-ish in a pandemic
|
Apr 09, 2020 |
|
Not just carriers ft. Taylor Kane from Remember the Girls
|
Apr 02, 2020 |
|
PKU is NOT like that time I was vegan!
|
Mar 26, 2020 |
|
Adulthood is hard! Ft. Anna from Our Odyssey (Live Recording)
|
Mar 24, 2020 |
|
Share your story! But only if you want to.
|
Mar 12, 2020 |