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....more
Patient Worthy
All Episodes (65)
From new to old
From new to old
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1. The MS Poltergeist, feat. Patient Advocate Jennifer Angus
Apr 26,2024 43:48 -
3. Hemophilia and Axel's Story, feat. Patient Advocate Kristina Robinson
Mar 22,2024 27:37 -
6. The Unmet Need in Rare Disease, feat. Dr. Emil Kakkis of Ultragenyx
Feb 09,2024 25:12 -
11. Von Hippel-Lindau Disease: Meet Patient Advocate Justin Corbin
Oct 13,2023 08:13 -
12. How to Support the Supporters, feat. The Courageous Parents Network
Dec 19,2022 28:26 -
13. Working Toward the Future, Feat. GACI Global and Inozyme Pharma
Sep 30,2022 22:18 -
14. The IRSF: 40 Years of Making Connections
Sep 02,2022 26:46 -
15. The 2022 Living Rare, Living Stronger Patient and Family Forum
Jun 21,2022 18:55 -
16. Getting the Support You Need, feat. Cancer Commons
May 27,2022 16:29 -
17. The Importance of Persistence, feat. Patient Advocate Nathan Ehrlich
May 05,2022 20:37 -
18. Forging a Path in Rare Disease Research, Feat. the Myrovlytis Trust
Mar 31,2022 18:48 -
19. Exciting Rare Disease Developments in the EU, feat. HAE Junior
Feb 28,2022 18:54 -
23. The Potential of CAR T-Cell Therapy, Feat. Dr. Robyn Stacy-Humphries
Dec 15,2021 23:37 -
24. Not Just Surviving, But Thriving With Pheo vs. Fabulous
Nov 12,2021 51:36 -
25. Hanging Onto Hope in the Face of AML
Oct 29,2021 12:30 -
26. The Importance of Connection With Jordan‘s Guardian Angels
Oct 21,2021 28:05 -
30. Making the "Invisible," Visible With Journalist Karina Sturm
Jul 30,2021 20:35 -
31. Cure Mito Foundation: The Importance of Patient Registries
Jul 16,2021 24:01 -
32. 37 Years of Research With the TSC Alliance
Jul 02,2021 29:25 -
33. Staying Strong and Pressing On With the Alagille Syndrome Alliance
Jun 17,2021 26:00 -
34. Living Rare, Living Stronger: NORD Patient and Family Forum
Jun 04,2021 26:07 -
35. Author Tom Seaman Talks About Adapting to Adversity
May 28,2021 28:18 -
36. Sophie's Hope and GSD1B
May 10,2021 21:52 -
37. Pemphigus and Pemphigoid: Talking Rare Disease Dermatology
Apr 23,2021 22:29 -
38. The 2021RAREis Scholarship
Apr 09,2021 25:13 -
39. Narcolepsy: A 20-Year Journey to Diagnosis
Apr 02,2021 18:36 -
40. Sharing Patient Voices With Elephants and Tea
Mar 12,2021 29:52 -
41. The Economic Burden of Rare Disease
Feb 26,2021 32:31 -
42. Helping Patients Achieve Their Potential With HAE Junior
Feb 15,2021 30:29 -
43. Fighting for Access and Awareness With Dreamsickle Kids
Feb 05,2021 16:56 -
45. 20 Years of Connections: The Glanzmann's Research Foundation
Dec 04,2020 28:31 -
46. No Day Wasted: The Adam Settle Story
Nov 20,2020 25:03 -
48. Danny's Dose: Prepare for the Worst and Work Toward the Best
Oct 16,2020 26:15 -
50. Rarest of the Rare: Neena Nizar and the Jansen's Foundation
Sep 11,2020 14:52 -
61. You're not failing at self-care: staying okay-ish in a pandemic
Apr 09,2020 35:35 -
62. Not just carriers ft. Taylor Kane from Remember the Girls
Apr 02,2020 20:37 -
63. PKU is NOT like that time I was vegan!
Mar 26,2020 33:28 -
64. Adulthood is hard! Ft. Anna from Our Odyssey (Live Recording)
Mar 24,2020 24:46 -
65. Share your story! But only if you want to.
Mar 12,2020 26:59
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.
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