Best Primary Immunodeficiency Podcasts (2025)

1
Problems in practice: Insurance with Dr. Marcus Shaker 31:49

14d 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…

1
Jorey's monthly wrap-up: April 2025 4:06

21d 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

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

23d 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…

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

26d 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 …

1
Bold Conversations: The elephant in the exam room 55:37

30d 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…

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

1M 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…

1
Jorey's monthly wrap-up: March 2025 2:31

2M 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

1
Undiagnosed: Gaslit and Gatekept 48:03

2M 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…

1
ChronicXTwenties: Transitioning from pediatric to adult care with Riley and Nick 37:53

3M 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…

1
Jorey's monthly wrap-up: February 2025 5:51

3M ago5:51

5:51

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

1
Bold Conversations: Health insurance 43:18

3M 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…

1
CEO update from Jorey Berry: January 2025 3:58

4M ago3:58

3:58

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

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

4M 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…

1
Undiagnosed: The Businessman 26:09

5M 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…

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

5M 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

1
Episode 12: Finale - Goodbye to Season 3! 9:49

5M 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

1
Ep 11: Research Nurse Coordinators, Logistically Important 40:51

5M 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 …

1
Trailer: Ep 11 Research Nurse Coordinators 1:00

5M 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

1
Q&A: Protecting yourself against COVID, flu, and RSV 30:43

5M 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…

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

6M 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…

1
Ep 10: Pregnancy and Childbirth, from genetic counselling to IVF 32:17

6M 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…

1
Trailer Ep 10: Pregnancy and Childbirth 1:00

6M 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

1
Ep 9: Men's Mental Health 28:10

6M 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

1
Trailer Ep9: Men's Mental Health 1:00

6M 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

1
Episode 8: APDS 35:40

6M 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

1
Trailer Ep 8: APDS 1:00

6M 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

1
Ep 7: Social Workers and Life Specialists; the importance of a holistic approach 33:14

6M 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…

1
Trailer Ep 7: Social Workers 1:00

6M 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

1
Episode 6: Clinical Trials in Canada 44:31

6M 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

1
Trailer: Episode 6, Clinical Trials 1:00

7M 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

1
Q&A: Antibody Deficiencies with Dr. Luke Wall 32:42

7M 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.…

1
Episode 5: DNA Music, Part 2 33:19

7M 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…

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

7M 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…

1
Trailer Ep5: DNA Music, Part 2 1:00

7M ago1:00

1:00

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

1
Episode 4: DNA Music Part 1 30:09

7M 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…

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

7M 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…

1
Trailer Ep4: DNA Music, Part 1 36:27

7M ago36:27

36:27

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

1
Episode 3: Gene Therapy Abroad 35:23

7M ago35:23

35:23

Gene therapy seems to be everywhere right now. But what is gene therapy? What is happening in Canada with gene therapy? And more importantly, what is happening in other countries that can teach us to create a sustainable solution for children with ultra-rare diseases to access novel gene therapies? In this episode, Andrea talks to Dr. Claire Booth,…

1
Trailer Ep3: Gene Therapy Abroad 1:00

7M ago1:00

1:00

Trailer episode 3 Season 3 is supported by PharmingBy ImmUnity Canada

1
Ep 2: National Patient Registries 36:19

7M ago36:19

36:19

What are patient registries? Why are they important and why should patients and caregivers care about about them? How can they impact patient care? Is there a patient registry for primary immunodeficiency in Canada? This week, Andrea talks to Dr. Beata Derfalvi as they answer some of these questions and also look at what Canada can learn from other…

1
Bold Conversations: CGD and medical immigration with Susanna Raj 42:57

7M ago42:57

42:57

Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20BC%2002.02%20Susanna%20Raj.pdfSusanna Raj joins Dr. Nicole to discuss the harrowing story of her childhood immigration from India to receive CGD treatment in the United States and Canada.The information, terminology, and opinions presented in this forum do not necessarily re…

1
Trailer Ep 2:National Patient Registries 1:00

8M ago1:00

1:00

Trailer for episode 2 Season 3 supported by PharmingBy ImmUnity Canada

1
Intro to Season 3 - We're Back! 12:01

8M ago12:01

12:01

Andrea is back with another season of Slice of PI! In this episode, host Andrea Fernandez de Soto, looks at what is in store over for listeners this season in Slice of PI. Season 3 is supported by PharmingBy ImmUnity Canada

1
Slice of PI Season 3 Trailer - We're Back! 0:59

8M ago0:59

0:59

Slice of PI is back for Season 3! Trailer for Episode 1, Intro to Season 3 Season 3 is supported by PharmingBy ImmUnity Canada

1
Bold Conversations: Inclusion in practice at the 2024 PI Conference 36:46

9M ago36:46

36:46

Transcript: https://primaryimmune.org/sites/default/files/Bold%20Conversations%202.2%20Transcription.pdfImmune Deficiency Foundation staff members Alissa Creamer and Megan Messick join Dr. Nicole to discuss the inclusions efforts that went into planning the blockbuster 2024 PI conference.Dr. Nicole's conference session (The Elephant in the Exam Roo…

1
Bold Conversations: Social determinants of health 22:53

10M ago22:53

22:53

Season 2 premiere. Dr. Nicole Rochester discusses social determinants of health, as well as ideas for creating more equitable living conditions for optimal public health.Follow Dr. Rochester on LinkedIn: https://www.linkedin.com/in/nicole-rochester-mdTo learn more about primary immunodeficiency, to donate, or to volunteer, visit https://primaryimmu…

1
Ask the expert: PI and fatigue 1:00:01

1y ago1:00:01

1:00:01

Dr. Joud Hajjar provides an explanation of the causes and potential treatments for symptoms of fatigue with primary immunodeficiency.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.TRANSCRIPT: https://primaryimmune.org/sites/default/files/PI%2…

1
The Student: Darcy Gott and the risk of experience 15:49

1y ago15:49

15:49

Darcy Gott shares stories of risks involved with having PI as a college student, from mismanaged university health systems to pressure to fit in, and beyond.By Immune Deficiency Foundation

1
Undiagnosed (feat. Dr. Kelley Hagerich): Two Different Traumas 24:15

1+ y ago24:15

24:15

One of the most universal issues those with primary immunodeficiency face in the U.S. is simply navigating a complicated medical system. Getting a referral to an immunologist can feel absolutely insurmountable, even before the inevitable struggles with prior authorizations and annual reviews from insurance companies for life-changing, or even life-…

1
Young adult roundtable: college, mental health, and PI. 52:19

1+ y ago52:19

52:19

**This conversation includes the topics of suicidal and self-harm ideation. We understand that not everyone is capable of hearing such conversations. Viewer discretion is advised.**This episode of the IDF Podcast is presented with support from Takeda, Horizon Therapeutics, CSL Behring, and Grifols. On this episode of The IDF Podcast, we turned to s…

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