Best Primary Immunodeficiency Podcasts (2025)

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Bold Conversations: Food justice with Dr. Jennifer Oilver 22:34

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3d ago22:34

22:34

TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20FOOD%20JUSTICE.pdfDr. Jennifer Oliver of Manna Movement Collaborative discusses food justice with Dr. Nicole. Topics include the language we use to discuss food scarcity, SNAP benefits, local food councils, and more. https://www.mannamovement.org/The information, terminology…

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Living well with PI: Caregiving for chronic illness 1:24:56

1M ago1:24:56

1:24:56

Jocelyn Cooper (Program manager, Black Women's Health Imperative) and Holly Jones (Executive director, HERstory In Color) give a presentation on caregiving and chronic illness.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.-------------------…

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Foundation Focus | September 2025 3:10

2M ago3:10

3:10

TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Foundation%20Focus%20September%202025.pdfImmune Deficiency Foundation CEO Jorey Berry provides updates to the community for the month of September. Topics include Walk for PI, upcoming webinar events, the 2024 annual report, and the film Compromised: Life without immunity.…

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ChronicXTwenties: College and mental health roundtable 47:57

2M ago47:57

47:57

**This conversation includes the topics of suicidal and self-harm ideation. We understand that not everyone is capable of hearing such conversations. Listener discretion is advised.**TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20CX20%20Mental%20health%20and%20college%20roundtable%20.pdfOn this throwback episode of Chron…

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Foundation Focus | August 2025 2:31

3M ago2:31

2:31

Transcript: file:///E:/2025/Podcasts/CEO%20Updates/Transcript%20-%20FF%20Aug%202025.pdfCEO Jorey Berry provides an update for the month of August 2025. Topics include Walk for PI, resources for a new school year, and the 2026 National PI Conference.By Immune Deficiency Foundation

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Lunch and Learn: HLH with Dr. Michael Jordan 56:36

3M ago56:36

56:36

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20HLH.pdfDr. Michael Jordan of Cincinnati Children's provides an overview of hemophagocytic lymphohistiocytosis (HLH).View a PDF of this presentation: https://primaryimmune.org/sites/default/files/v2%20FOR%20WEB%20HLH.pdfTo learn more, volunteer, or donate, visit primaryimmune…

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Undiagnosed: The wounds that won't close 11:15

3M ago11:15

11:15

Dionne Stalling's 45-year diagnosis journey started with a mosquito bite. Her quest for answers took her through some of the unflinching truths of the healthcare system. This is her story.You can hear more of Dionne's story in the Immune Deficiency Foundation's new documentary, "Compromised: Life without immunity." Visit primaryimmune.org/compromis…

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Foundation Focus | July 2025 3:43

4M ago3:43

3:43

President and CEO Jorey Berry provides an update for the month of July. Topics include new programming, Walk for PI, new resources, and our organization's statement regarding the passage of H.R.1 (OBBBA).*This message was recorded prior to the incredible show of support by Ironmouse and her community.*…

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Bold Conversations: Misinformation with Dr. Cynthia Baur 39:45

4M ago39:45

39:45

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Bold%20Conversations%20-%20Misinformation.pdfCynthia Baur, PhD, is a health literacy and health communication expert focused on improving health literacy at the individual, family, community and organizational levels. She directs the University of Maryland Horowitz Center for He…

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ChronicXTwenties: Demystifying advocacy 34:29

4M ago34:29

34:29

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Chronic%20Twenties%20Advocacy.pdfImmune Deficiency Foundation staff members Rebecca Russ (grassroots advocacy specialist) and Eric Feigen (regulatory affairs manager) provide insight on what advocacy is, its role in the greater PI community, and the power of young voices.Sign up…

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Foundation Focus: June 2025 update with CEO Jorey Berry 2:55

5M ago2:55

2:55

This program is presented with support from CSL Behring, Takeda, and Grifols.Read a transcript of this episode: file:///E:/2025/Podcasts/CEO%20Updates/Transcript%20-%20CEO%20Update%20June%2025.pdfImmune Deficiency Foundation CEO Jorey Berry discusses our new text message program, an upcoming Lunch & Learn, and an exciting new volunteer opportunity.…

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Lunch & Learn: Understanding genetic variants in APDS 45:16

5M ago45:16

45:16

Transcript: https://primaryimmune.org/sites/default/files/APDS%20Lunch%20and%20Learn%20transcript.pdfDr. Jolan Walter (University of South Florida, Johns Hopkins All Children's Hospital) provides an explanation of genetic variants in APDS.View a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20APDS%20IDF%20Lunch%2…

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Jorey's monthly wrap-up: May 2025 3:29

6M ago3:29

3:29

Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20May%20CEO%20Update.pdfImmune Deficiency Foundation CEO Jorey Berry provides an update for the month of May, 2025.By Immune Deficiency Foundation

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Problems in practice: Insurance with Dr. Marcus Shaker 31:49

6M ago31:49

31:49

Transcript: https://primaryimmune.org/sites/default/files/Transcript%20Shaker.pdfDr. Marcus Shaker is a professor of pediatrics in medicine at Dartmouth's Geisel School of Medicine. On this episode of the Immune Deficiency Foundation podcast, he joined staff members Angie Kotarski, community resource navigator, and Stephanie Steele, director of pay…

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Jorey's monthly wrap-up: April 2025 4:06

7M ago4:06

4:06

Transcript: https://primaryimmune.org/sites/default/files/April%20CEO%20Transcript.pdfImmune Deficiency Foundation president and CEO Jorey Berry provides updates to the PI community.By Immune Deficiency Foundation

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SPECIAL LOOK: Advocacy Day 2025 Training 1:05:36

7M ago1:05:36

1:05:36

Transcript: https://primaryimmune.org/sites/default/files/Advocacy%20Day%20Training%20Transcript.pdfThis week, 150 advocates will represent the Immune Deficiency Foundation and the greater PI community on Capitol Hill in Washington, D.C. But what does that mean, exactly? Why is it important? And what are these volunteers responsible for? This episo…

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Living well with PI: Impact of federal policy changes on the PI community 1:04:22

7M ago1:04:22

1:04:22

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Legislative%20webinar.pdfThis panel discussion features Immune Deficiency Foundation CEO Jorey Berry, as well as Chief Public Policy Officer Lynn Albizo, Community Resource Navigator Angie Kotarski, and Jodi Taub, owner of Jodi Taub Therapy, discuss the impact of recent federal …

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Bold Conversations: The elephant in the exam room 55:37

7M ago55:37

55:37

https://primaryimmune.org/sites/default/files/Bold%20Conversations%203.2%20Transcript.pdfIn this session from the 2024 PI Conference in Chicago, Dr. Nicole gave a very vulnerable talk about her experiences navigating the healthcare system, both as a physician and as a caregiver for her father. To learn more, volunteer, or donate, visit primaryimmun…

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Decoding PI: The science of gene therapy and gene editing 1:14:45

7M ago1:14:45

1:14:45

Transcript: https://primaryimmune.org/sites/default/files/01PROOF%20transcription%20gene%20editing%20webinar.pdfView a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20Gene%20editing.pdfSusan Prockop, MD of Boston Children's Hospital and Harvard Medical School provides an overview and recent updates to gene t…

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Jorey's monthly wrap-up: March 2025 2:31

8M ago2:31

2:31

Immune Deficiency Foundation CEO Jorey Berry provides an overview of updates for the community in March 2025.By Immune Deficiency Foundation

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Undiagnosed: Gaslit and Gatekept 48:03

8M ago48:03

48:03

Transcript: https://primaryimmune.org/sites/default/files/FOR%20WEB%20Undiagnosed%20Ilana%20Transcript.pdfTikTok personality and author of "Medical Gaslighting" Ilana Jacqueline has captivates her curious followers with tips on navigating a hostile medical system. Unfortunately, her lessons are often things she's learned the hard way. Medical gasli…

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ChronicXTwenties: Transitioning from pediatric to adult care with Riley and Nick 37:53

9M ago37:53

37:53

Transcript: https://primaryimmune.org/sites/default/files/Cx20%201.1%20transcript.pdf.Immune Deficiency Foundation volunteers Riley and Nick discuss the complications and strategies that helped them transition from pediatric to adult care for their chronic illnesses.The information, terminology, and opinions presented in this forum do not necessari…

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Jorey's monthly wrap-up: February 2025 5:51

9M ago5:51

5:51

Immune Deficiency Foundation president and CEO Jorey Berry provides updates to the community for February 2025By Immune Deficiency Foundation

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Bold Conversations: Health insurance 43:18

9M ago43:18

43:18

Transcript: https://primaryimmune.org/sites/default/files/Bold%20Conversations%203.1%20Transcript.pdfJalisa Clark is a Research Fellow at the Center on Health Insurance Reforms (CHIR) at Georgetown University’s McCourt School of Public Policy. Today, she joins Dr. Nicole for a deep dive into inequitable health insurance practices in the U.S.The inf…

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Living well with PI: Mental health and wellness tips 1:21:20

10M ago1:21:20

1:21:20

Transcript: https://primaryimmune.org/sites/default/files/Mental%20health%20tips.pdfBecky Lenning is the owner and clinical director of Yellow Lotus Clinical Services for Healing and Wellness, where she brings over fourteen years of clinical experience as a licensed professional counselor to her practice.To learn more, volunteer, or donate, visit p…

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CEO update from Jorey Berry: January 2025 3:58

10M ago3:58

3:58

CEO update from Jorey Berry: January 2025primaryimmune.org/resourcesBy Immune Deficiency Foundation

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Undiagnosed: The Businessman 26:09

11M ago26:09

26:09

CONTENT WARNING: This episode contains discussions of suicide planning. If you need help, call the National Suicide Hotline at 988.Transcript: https://primaryimmune.org/sites/default/files/Undiagnosed%20Matt%20Lesser%20Transcript.pdf.The story of Matt Lesser is one that's marked, of course, by persistence, but also by vulnerability, self reflection…

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Trailer ep 12: Goodbye to Season 3! 1:00

11M ago1:00

1:00

Make sure to join us this week when Andrea says goodbye to another season of Slice of PI.By ImmUnity Canada

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Episode 12: Finale - Goodbye to Season 3! 9:49

11M ago9:49

9:49

Join Andrea as she says goodbye to another season of Slice of PI! In this episode Andrea will look at some key takeaways from the season, highlights and messages from and for the PI community.By ImmUnity Canada

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Ep 11: Research Nurse Coordinators, Logistically Important 40:51

11M ago40:51

40:51

This week, Andrea looks at the important role that research nurse coordinators play in clinical trials. What support can they offer? How does their work impact patients and families with PI? What role do they play in the medical field and why are they so important? Join Andrea and her guest, Jordyn Arnold as they discuss this topic and this little …

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Trailer: Ep 11 Research Nurse Coordinators 1:00

11M ago1:00

1:00

Take a listen to what is coming up in the next episode of Slice of PI when host, Andrea, looks at the importance of the research nurse coordinator role when it comes to clinical trials. Guest: Jordyn Arnold Season 3 is supported by PharmingBy ImmUnity Canada

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Q&A: Protecting yourself against COVID, flu, and RSV 30:43

11M ago30:43

30:43

TRANSCRIPT: https://primaryimmune.org/sites/default/files/Covid%2C%20Flu%2C%20RSV.pdfThis informative Q&A session offers crucial insights for patients, caregivers, and healthcare professionals. Don't miss this opportunity to enhance your understanding of immunization in the context of PI and learn practical steps for safeguarding health during chal…

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Decoding PI: Unraveling the GI Connection 1:16:05

12M ago1:16:05

1:16:05

Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20GI%20Connection.pdfView a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20PI%20and%20GI%20connection.pdfPeter J. Mannon, M.D. discusses common gastrointestinal symptoms for people with primary immunodeficiency as well, and discusses th…

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Ep 10: Pregnancy and Childbirth, from genetic counselling to IVF 32:17

12M ago32:17

32:17

This week on Slice of PI, Andrea looks at the challenges pregnancy and childbirth poses to the primary immunodeficiency community. Join Andrea as she tackles topics of genetic counselling and IVF, and how these are and can be supported in Canada. This week's guest is Jennifer DiRaimo, a genetic counsellor and researcher with the Platelet Disorder S…

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Trailer Ep 10: Pregnancy and Childbirth 1:00

12M ago1:00

1:00

Take a quick listen to what's coming up next on Slice of PI in episode 9: Pregancy and Childbirth, from genetic counselling to IVF Season 3 is supported by PharmingBy ImmUnity Canada

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Ep 9: Men's Mental Health 28:10

12M ago28:10

28:10

Join Andrea and special guest MP Matt Jeneroux for a Slice of PI Movember episode on Men's Mental Health. In this episode they will discuss breaking the stigma of men's mental health and the awareness that is needed to create safe spaces for men in everyday places. Season 3 is supported by PharmingBy ImmUnity Canada

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Trailer Ep9: Men's Mental Health 1:00

12M ago1:00

1:00

Take a quick listen to what's coming up next as Andrea is joined for a special Movember episode by MP Matt Jeneroux to talk about Men's Mental Health. Season 3 is supported by PharmingBy ImmUnity Canada

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Episode 8: APDS 35:40

12M ago35:40

35:40

Join Andrea and her guest clinical immunologist, Dr Julia Upton, as they discuss a rare and underdiagnosed primary immunodeficiency, APDS. Would you know the signs, symptoms and what to look for? Season 3 is supported by PharmingBy ImmUnity Canada

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Trailer Ep 8: APDS 1:00

1y ago1:00

1:00

Take a look at what is coming next week in episode 8, "APDS" Season 3 is supported by PharmingBy ImmUnity Canada

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Ep 7: Social Workers and Life Specialists; the importance of a holistic approach 33:14

1y ago33:14

33:14

This week, Andrea looks at the ins and outs of supporting patients and their families including the planning and emotional strategies. Join her as she explores why professionals such as social workers and child life specialists are so necessary in a holistic approach to care. This week's guests include Danielle Sikora and Stephanie Wanner. Season 3…

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Trailer Ep 7: Social Workers 1:00

1y ago1:00

1:00

Take a look at the next episode, "Social workers and child life specialists; the importance of a holistic approach" Season 3 is supported by PharmingBy ImmUnity Canada

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Episode 6: Clinical Trials in Canada 44:31

1y ago44:31

44:31

This week, Andrea talks to two experts, Dr. Thierry Lacaze and Breanne Stewart from RareKids CAN, about the importance of clinical trials for rare disease patients and families in Canada and what they are doing to change things. Season 3 is supported by PharmingBy ImmUnity Canada

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Trailer: Episode 6, Clinical Trials 1:00

1y ago1:00

1:00

Take a listen to what is coming up in the next episode of Slice of PI, "Clinical Trials in Canada" Season 3 is supported by PharmingBy ImmUnity Canada

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Q&A: Antibody Deficiencies with Dr. Luke Wall 32:42

1y ago32:42

32:42

Transcript: https://primaryimmune.org/sites/default/files/LUKE%20WALL%20antibody%20deficiency%20q%26a.pdfDr. Luke Wall discusses antibody deficiencies in this Q&A from October 24, 2024.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.…

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Episode 5: DNA Music, Part 2 33:19

1y ago33:19

33:19

Can DNA be made into music? In this episode, Andrea talks to two researchers at the University of Alberta who are doing just that. Listen and find out how music composed by converting protein sequences or genes to musical notes can impact the PI community. Part 2 of 2 Season 3 is supported by Pharming…

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ChronicXTwenties: Heartbreakingly beautiful (Part 2) 1:13:06

1y ago1:13:06

1:13:06

Transcript: https://primaryimmune.org/sites/default/files/Cx20%20ep%202%20transcript.pdfIn part two of our pilot episode, Heartbreakingly Beautiful, Victoria Medl and Cassie Mummert continue their discussion about hope, support, and learning who to trust with vulnerable truths about their health. Content warning: This podcast features sensitive sub…

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Trailer Ep5: DNA Music, Part 2 1:00

1y ago1:00

1:00

Trailer for episode 5 Season 3 is supported by PharmingBy ImmUnity Canada

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Episode 4: DNA Music Part 1 30:09

1y ago30:09

30:09

Can DNA be made into music? In this episode, Andrea talks to two researchers at the University of Alberta who are doing just that. Listen and find out how music composed by converting protein sequences or genes to musical notes can impact the PI community. Part 1 of 2 episodes Season 3 is supported by Pharming…

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ChronicXTwenties: Heartbreakingly beautiful (Part 1) 1:01:50

1y ago1:01:50

1:01:50

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20ChronicxTwenties%201.1-1.pdfIn this 2-part pilot episode, two members of the Immune Deficiency Foundation’s youth advisory committee -- Cassie Mummert and Victoria Medl – discuss mental health coping strategies, spirituality, and the complications and joys of dating other pe…

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Trailer Ep4: DNA Music, Part 1 36:27

1y ago36:27

36:27

Trailer for episode 4, part 1 Season 3 is supported by PharmingBy ImmUnity Canada