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On the show
From 11 epsHosts
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Recent episodes
Long COVID & primary immunodeficiency with Dr. Manish Butte
Jun 16, 2026
Unknown duration
Primary immunodeficiency in 2026: New practice parameters, genetic testing, and what's changed for patients
May 27, 2026
53m 01s
Every piece adds strength: Interactive art at the 2026 National Conference
May 5, 2026
8m 25s
2026 National Conference: What to Expect in San Antonio
Apr 5, 2026
13m 28s
"Make your own path as you walk." | CEO Jorey Berry introduces medical director Dr. Paula Henao
Mar 25, 2026
35m 09s
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| Date | Episode | Topics | Guests | Brands | Places | Keywords | Sponsor | Length | |
|---|---|---|---|---|---|---|---|---|---|
| 6/16/26 |  Long COVID & primary immunodeficiency with Dr. Manish Butte | Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20Long%20covid%20and%20PI.pdf Dr. Manish Butte (E. Richard Stiehm Endowed Chair, Professor, and Division Chief of Pediatric immunology at UCLA) provides an update on what's known (and unknown) about long COVID and primary immunodeficiency. View this webinar on YouTube: https://youtu.be/5xWTdxCudvA The information, terminology, and opinions presented in this forum do not necessarily reflect the views of the Immune Deficiency Foundation, its Board of Trustees, sponsors, or donors. Your support of the Immune Deficiency Foundation makes programming like this possible. Visit www.primaryimmune.org/donate to further our mission. | — | ||||||
| 5/27/26 | Primary immunodeficiency in 2026: New practice parameters, genetic testing, and what's changed for patients✨ | primary immunodeficiencypractice parameters+3 | Dr. Paula HenaoKatherine Lontok, Ph.D. | Immune Deficiency FoundationAmerican College of Allergy, Asthma, and Immunology | — | primary immunodeficiencygenetic testing+3 | — | 53m 01s | |
| 5/5/26 |  Every piece adds strength: Interactive art at the 2026 National Conference✨ | interactive artNational Conference+3 | Elizabeth Ferguson | Immune Deficiency Foundation | San Antonio | interactive artNational Conference+3 | — | 8m 25s | |
| 4/5/26 |  2026 National Conference: What to Expect in San Antonio✨ | National ConferenceImmune Deficiency+3 | Megan Messick | Immune Deficiency Foundation | San Antonio | Immune Deficiency Foundation2026 National Conference+3 | — | 13m 28s | |
| 3/25/26 | "Make your own path as you walk." | CEO Jorey Berry introduces medical director Dr. Paula Henao✨ | immunologycareer development+3 | Dr. Paula Henao | Immune Deficiency Foundation | — | immunologyhealthcare+3 | — | 35m 09s | |
| 2/20/26 | Exploring "Compromised: Life Without Immunity" | Behind the documentary✨ | documentarypanel discussion+3 | Kim EverettBen Everett+6 | Immune Deficiency FoundationCompromised: Life Without Immunity | — | immune deficiencydocumentary+3 | — | 1h 02m 40s | |
| 2/3/26 | Why PI affects the skin: Common rashes, infections, and immune dysregulation (dermatology deep dive)✨ | primary immunodeficiencydermatology+3 | Dr. Alexandra FreemanDr. Heidi H. Kong | Immune Deficiency Foundation | — | primary immunodeficiencyskin rashes+3 | — | 1h 32m 15s | |
| 1/13/26 | Primary immunodeficiency & dental health: Protecting your mouth when your immune system is fragile✨ | primary immunodeficiencyoral health+3 | Dr. Roger Arce | Immune Deficiency FoundationIDF | San Antonio, TX | primary immunodeficiencyoral health+3 | — | 1h 37m 12s | |
| 12/17/25 |  Undiagnosed: Reuben & Sherri Johnson on CGD, chronic illness, and the fight for healthcare✨ | chronic illnesshealthcare+3 | Reuben JohnsonSherri Johnson | Immune Deficiency FoundationLinkedIn+2 | — | chronic granulomatous diseaseCGD+3 | — | 30m 38s | |
| 12/2/25 | Cancer risk in primary immunodeficiency (PI): Lymphoma, screening, and treatment explained✨ | primary immunodeficiencycancer risk+3 | Dr. Charlotte Cunningham-Rundles | Immune Deficiency FoundationIDF | — | primary immunodeficiencycancer+3 | — | 1h 10m 29s | |
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| 11/24/25 |  Job Hunting With Primary Immunodeficiency: HR Advice on Disclosure, Accommodations & Benefits✨ | job huntingprimary immunodeficiency+4 | Myles Temple | Immune Deficiency Foundation | — | job huntingprimary immunodeficiency+6 | — | 54m 04s | |
| 11/19/25 | How FOXP3 changed immunology: Tregs, IPEX, and the Nobel Prize explained✨ | immunologyFOXP3+4 | Dr. Troy TorgersonKatherine Lontok | Immune Deficiency FoundationAllen Institute for Immunology | — | FOXP3Tregs+4 | — | 35m 27s | |
| 11/3/25 |  Bold Conversations: Food justice with Dr. Jennifer Oilver | TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20FOOD%20JUSTICE.pdf Dr. 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, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. To support the work of the Immune Deficiency Foundation, visit www.primaryimmune.org/donate. | — | ||||||
| 10/6/25 | Living well with PI: Caregiving for chronic illness | 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. --------------------------------------------------------------------------------------------------- Inequities in the rare disease community: https://21259597.fs1.hubspotuserconte... RDDC Patient & caregiver advisory board interest form: https://docs.google.com/forms/d/e/1FA... HERStory in Color: https://herstoryincolor.org/ IDF Caregiver compassion & connection guide: https://primaryimmune.org/resources/p... RDDC: https://www.rarediseasediversity.org/ | — | ||||||
| 9/29/25 | Foundation Focus | September 2025 | TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Foundation%20Focus%20September%202025.pdf Immune 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. | — | ||||||
| 9/22/25 | ChronicXTwenties: College and mental health roundtable | **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.pdf On this throwback episode of ChronicxTwenties, we revisit a roundtable from December 2023. Cassie Mummert, Darcy Gott, Ethan McGrew, Jesse McCall, Lance McCall, and Victoria Medl discuss how they navigate the stress of college, postgraduate studies, and mental wellness with primary immunodeficiency. In memory of Ethan McGrew. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. | — | ||||||
| 8/25/25 | Foundation Focus | August 2025 | Transcript: file:///E:/2025/Podcasts/CEO%20Updates/Transcript%20-%20FF%20Aug%202025.pdf CEO 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. | — | ||||||
| 8/21/25 | Lunch and Learn: HLH with Dr. Michael Jordan | Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20HLH.pdf Dr. 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.pdf To learn more, volunteer, or donate, visit primaryimmune.org/donate. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. | — | ||||||
| 8/19/25 |  Undiagnosed: The wounds that won't close | 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/compromised to register. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. | — | ||||||
| 7/28/25 |  Foundation Focus | July 2025 | 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.* | — | ||||||
| 7/23/25 |  Bold Conversations: Misinformation with Dr. Cynthia Baur | Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Bold%20Conversations%20-%20Misinformation.pdf Cynthia 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 Health Literacy, the nation's first academic health literacy center, and is a professor in the Department of Behavioral and Community Health. She joins Dr. Nicole for a conversation about misinformation, disinformation, what we've learned about combatting them. https://sph.umd.edu/research-impact/research-centers/horowitz-center-health-literacy To donate, volunteer, or learn more about primary immunodeficiency, visit www.primaryimmune.org. | — | ||||||
| 7/17/25 |  ChronicXTwenties: Demystifying advocacy | Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Chronic%20Twenties%20Advocacy.pdf Immune 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 for IDF action alerts to make your voice heard in just a few clicks! https://primaryimmune.org/get-involved/advocate/action-alerts | — | ||||||
| 6/30/25 | Foundation Focus: June 2025 update with CEO Jorey Berry | 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.pdf Immune Deficiency Foundation CEO Jorey Berry discusses our new text message program, an upcoming Lunch & Learn, and an exciting new volunteer opportunity. | — | ||||||
| 6/10/25 | Lunch & Learn: Understanding genetic variants in APDS | Transcript: https://primaryimmune.org/sites/default/files/APDS%20Lunch%20and%20Learn%20transcript.pdf Dr. 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%20and%20Learn_jw_toshare.pdf The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. | — | ||||||
| 5/29/25 | Jorey's monthly wrap-up: May 2025 | Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20May%20CEO%20Update.pdf Immune Deficiency Foundation CEO Jorey Berry provides an update for the month of May, 2025. | — | ||||||
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