Best Pkd Podcasts (2026)

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Family Planning and PKD: What to Know at Every Stage 40:53

Play Pause

21d ago40:53

40:53

What does family planning look like with PKD? In this episode, we'll cover the essential information every PKD patient should know before, during, and after pregnancy. We'll share expert insights on managing PKD during pregnancy, navigating childbirth, and handling postnatal care. Plus, you'll discover helpful resources and support networks designe…

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Interview #37 - Ben H. Winters - Benjamin 37:32

23d ago37:32

37:32

D. Harlan Wilson's interview with author Ben H. Winters. Conducted in late July, they discuss Ben's now-completed, heavily Philip K. Dick influenced comic series Benjamin. Ben began his career with the parody novel Sense and Sensibility and Sea Monsters and is best known for mystery/sci-fi novels such as The Last Policeman and Underground Airlines,…

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Replay: PKD International Guidelines 37:30

25d ago37:30

37:30

On this episode of 'Just Listen, Voices of PK Deficiency,' host Dr. Rachel Grace is joined by patient advocate leaders Tamara Schryver of Thrive with PKD and Alejandra Watson of the PKD Foundation to discuss the newly available international guidelines for diagnosing and managing pyruvate kinase deficiency (PKD). The discussion highlights the impor…

1
Exploring Genetic Testing in PKD 23:29

2M ago23:29

23:29

Genetic testing is transforming how we understand and manage polycystic kidney disease (PKD). In our latest episode of PKD Chronicles, we dive deep into the science and significance of genetic testing for PKD patients. Discover why genetic testing is a crucial step in understanding and managing PKD. Explore how genetic insights are shaping personal…

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Replay: Iron Overload with Dr. Sujit Sheth 31:39

2M ago31:39

31:39

On this episode, Dr. Rachael Grace is in conversation with Dr. Sujit Sheth about iron overload. You'll learn about iron overload and why it occurs in pyruvate kinase deficiency, explain the potential complications as well as the importance of managing and monitoring iron overload. SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast a…

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7 - Roog 42:29

2M ago42:29

42:29

We read Roog! We have a patreon at patreon.com/chickswithdick Our theme is by Haunted Airports! Next Time we read The Piper In The Woods!By Chicks with PKD

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What You Should Know About Tolvaptan 45:32

3M ago45:32

45:32

Unravel the story behind tolvaptan, a medication revolutionizing the treatment landscape for polycystic kidney disease (PKD), in this episode of PKD Chronicles. We'll give a brief of the history of this drug. Also, learn how tolvaptan works and how it specifically targets the underlying causes of PKD. Then, we will explore the nuances of using tolv…

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Interview #36 - Cody Goodfellow - New Tomorrow - with Anthony Trevino 1:19:08

3M ago1:19:08

1:19:08

Hello DickHeads. The Hangout interview with Cody Goodfellow somehow didn't get recorded. To make up for it, David decided to rope in our old friend and former co-host, Anthony Trevino, to do a more traditional DickHeads Podcast interview with the author. Here they discuss Cody's latest novel, New Tomorrow, a little history, and Cody's views on the …

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6 - The Defenders 1:56:24

3M ago1:56:24

1:56:24

This episode of Chicks with Dick Jane and Roz look read "The Defenders". Our theme song is "Rocket Going Up" by Haunted Airports. We discuss the radio play at patreon.com/chickswithdick Our next episode is about "Roog"By Chicks with PKD

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Understanding Clinical Trials and Registries in PKD Research 33:28

4M ago33:28

33:28

In this episode, listeners are invited to explore the world of clinical trial participation and registry involvement in PKD research. Diving into the significance of these initiatives, the episode sheds light on why participation is crucial for advancing scientific understanding and developing effective treatments for PKD. Additionally, it addresse…

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5 - Mr Spaceship 1:16:30

4M ago1:16:30

1:16:30

Welcome to Chicks with Dick, where Jane and Roz look through the works of Phillip K Dick. Today we read "Mr Spaceship". Our theme song is "Rocket Going Up" by Haunted Airports. Our next episode is about "The Defenders".By Chicks with PKD

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Focus on the Rising with Lisa Batista 53:19

4M ago53:19

53:19

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 guest today is Lisa Batista, author of the newly released memoir, "Falling: A Journey of Strength, Survival and Rising," which is now available on Amazon, …

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Regular and Non-Regular Transfusions in PK deficiency 38:45

4M ago38:45

38:45

Join Dr. Rachael Grace as she interviews Dr. Eduard van Beers, a leading expert in rare anemia including Pyruvate Kinase (PK) deficiency. They discuss the clinical challenges, benefits, and complications associated with transfusions for PK deficiency, underscoring the importance of personalized care and international collaboration for optimizing pa…

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4 - The Little Movement 47:42

4M ago47:42

47:42

Welcome to Chicks with Dick, where Jane and Roz look through the works of Phillip K Dick. Today we read "The Little Movement". Our theme song is "Rocket Going Up" by Haunted Airports. Our next episode is about "Mr Spaceship".By Chicks with PKD

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Measuring Progress: Understanding TKV in PKD Management 36:05

5M ago36:05

36:05

Listeners are invited to delve into the intricacies of Total Kidney Volume (TKV) and its role in tracking the progression of PKD. Discover how TKV is measured, what it signifies for disease progression, and its implications for treatment decisions. The episode explores treatments that impact TKV measurements and offers guidance on how patients and …

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3 - The Skull 1:02:50

5M ago1:02:50

1:02:50

Welcome to Chicks with Dick, where Jane and Roz look through the works of Phillip K Dick. Today we read "The Skull". Our theme song is "Rocket Going Up" by Haunted Airports. Our next episode is about "The Little Movement".By Chicks with PKD

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2 - The Gun 1:07:57

5M ago1:07:57

1:07:57

Welcome to Chicks with Dick, where Jane and Roz look through the works of Phillip K Dick. Today we read "The Gun". Our theme song is "Rocket Going Up" by Haunted Airports. Our next episode is about "The Skull".By Chicks with PKD

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1 - Beyond Lies The Wub 1:07:10

6M ago1:07:10

1:07:10

Welcome to Chicks with Dick, where Jane and Roz look through the works of Phillip K Dick. Today we read "Beyond Lies The Wub". Our theme song is "Rocket Going Up" by Haunted Airports. Our next episode is about "The Gun"By Chicks with PKD

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Empowerment, Support, and Connection While Navigating PKD – Part 2 28:22

6M ago28:22

28:22

In this episode, we continue our conversation with Lisa Smallwood Belk and Alix Piccirilli, on how PKD has impacted their lives and families. In part two, Lisa and Alix dive into practical, actionable ways people with PKD and their loved ones can make a difference, including: Connecting with the PKD community online Participating in clinical trials…

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Chicks With Dick Trailer 0:45

6M ago0:45

0:45

Welcome to Chicks with Dick, where Jane and Roz look through the works of Phillip K Dick. Our first episode will be on "Beyond Lies The Wub". Our theme song is "Rocket Going Up" by Haunted Airports See you soon!By Chicks with PKD

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Monitoring & Management of Chronic Complications in PK Deficiency 40:13

6M ago40:13

40:13

On this episode of Just Listen: Voices of PK Deficiency, host Dr. Rachel Grace interviews Dr. Andreas Glenthøj, a hematologist from Copenhagen University Hospital, about his journey into genetic red blood cell disorders and the latest international guidelines for managing PK deficiency. They discuss various complications like iron overload, bone de…

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Empowerment, support, and connection while navigating PKD - Part I 36:02

7M ago36:02

36:02

By PKD Foundatoin

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PKD and Emotions: Real Talk for Young Warriors 46:30

8M ago46:30

46:30

This episode speaks directly to young people living with PKD, addressing the profound emotional challenges that come with the territory. From dealing with a new diagnosis to navigating feelings of loss and uncertainty, we tackle the mental health aspects of PKD head-on. Join us for honest conversations about grief, resilience, and the mental hurdle…

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Understanding the PKD Life Stage Model 25:47

8M ago25:47

25:47

On this episode, guest host Janie Davis, Director of Patient Advocacy at Agios Pharmaceuticals, discusses the Life Stage Model initiative with patient advocacy leaders, Tamara Scriver and Alejandra Watson. They delve into the work of the PKD Advocacy Advisory Council (AAC) and how it addresses the unmet needs of the community. The conversation high…

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Interview #35 - Anthony Peake - A Life of Philip K. Dick 1:51:53

8M ago1:51:53

1:51:53

Hello, PKD & Anthony Peake fans. D. Harlan Wilson conducted this interview with the acclaimed author a while back, and finally, here it is now. Get ready to get metaphysical as they discuss everything from aliens to the true meaning of Deja Vu to mind-opening drugs—All within the framework of Philip K. Dick's life and beliefs.Our Patreon ►► http://…

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Navigating the Patient's Journey featuring Brenda Snow 57:59

9M ago57:59

57:59

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 Brenda's own journey with Multiple Sclerosis and how she has turned it into a career and guidebook for others facing chronic diagnoses. You can find B…

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Episode #52 - Radio Free Albemuth - with Lisa Morton 2:38:44

9M ago2:38:44

2:38:44

The acclaimed horror novelist and Radio Free Albemuth playwright Lisa Morton joins the DickHeads for the final published science fiction novel we have to cover. Radio Free Albemuth is part autobiography, part VALIS mythology, and part rough draft. Most of all, it is pure PKD. Plus: Riffing on the Royal Portable. Fappers. And making groovy sandwiche…

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PKD Conference 29:51

12M ago29:51

29:51

On this episode of Just Listen: Voices of PK Deficiency, guest host Janie Davis (Director, Patient Advocacy at Agios) is joined by special guests Tamara Schryver, Jill Welle, and Alejandra Watson to discuss the impact and organization of the second international PKD Conference. They share their experiences, the importance of international collabora…

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Interview #34 - Linda Castellani - The Dark-Haired Girl 1:17:12

1y ago1:17:12

1:17:12

Content warning: Linda is honest about the sexist environment at the university at the time; there are plenty of ugly moments between Phil and Linda, which are explained in this podcast. –DAOn this episode of the Dickheads podcast, The Davids welcome Linda Castellani. In the early 70s, she was an English major at Cal State Fullerton when her profes…

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The Role of AI in Medicine feat. Joe Lennerz, BostonGene 38:33

1y ago38:33

38:33

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 immunolo…

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Episode #51 - In Milton Lumky Territory 2:17:15

1y ago2:17:15

2:17:15

Hello fellow DickHeads. Yes, we are back. No, Langhorne is not dead yet. And this time, it's another straight novel, In Milton Lumky Territory. Another trunk piece published shortly after his untimely death. Here, he tells the story of young Bruce, his attempt to make it as a salesman in the Pacific Northwest, and the typewriters that would plague …

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Spreading PAH Awareness featuring Steve Smith 25:38

1y ago25:38

25:38

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, bel…

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Optimizing Nutrition for PK Deficiency: A Patient & Dietitian's Perspective 37:49

1y ago37:49

37:49

his episode, Dr. Rachael Grace welcomes back Tamara Schryver, PhD, RD, President of Thrive with PK deficiency, to discuss the essential role of nutrition and physical activity for individuals with PK deficiency. They explore the importance of iron management, vitamin intake, and tailored dietary plans developed by registered dietitians. Dr. Schryve…

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All About Koolen de-Vries Syndrome, feat. Patient Advocate Ashley Point 26:49

1y ago26:49

26:49

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, resea…

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Understanding Splenectomy in PK Deficiency 27:34

1+ y ago27:34

27:34

On this episode, host Dr. Rachel Grace interviews Dr. Satheesh Chonat, a pediatric hematologist and expert in red cell disorders. They discuss Dr. Chonat's career path and focus on the complexities of managing anemia in patients with pyruvate kinase deficiency, emphasizing the role of the spleen. They explore why splenectomy might be considered, po…

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PKD and the Gift of Life, feat. Patient Advocate Valen Keefer 40:10

1+ y ago40:10

40:10

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 …

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The Power of Resiliency, Feat. Multiple Myeloma Patient Advocate Keisha Hickson 50:02

1+ y ago50:02

50:02

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 resilie…

1
PKD International Guidelines 37:30

1+ y ago37:30

37:30

On this episode of 'Just Listen, Voices of PK Deficiency,' host Dr. Rachel Grace is joined by patient advocate leaders Tamara Schryver of Thrive with PKD and Alejandra Watson of the PKD Foundation to discuss the newly available international guidelines for diagnosing and managing pyruvate kinase deficiency (PKD). The discussion highlights the impor…

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Epilepsy and Unmet Need, feat. The LGS Foundation and Ovid Therapeutics 42:39

1+ y ago42:39

42:39

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: W…

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Live Podcast from PKD Fest 2024 - Featuring Jonathan Lethem & Stephen Graham Jones 1:08:39

1+ y ago1:08:39

1:08:39

The 'Not a Book Club Book Club' podcast on PKD, his books, and influence.We recently went live from the Philip K. Dick Festival in Fort Morgan, CO, along with fellow DickHeads Jonathan Lethem & Stephen Graham Jones. I was at home but had fun in the chat and even managed to get some technical difficulties under control once I realized I could. Enjoy…

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Ewing Sarcoma and the New Normal, feat. Patient Advocate Brandi Benson 19:48

1+ y ago19:48

19:48

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 can…