Immune Deficiency Foundation

Episoder

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  Why some people with genetic variants never get sick: A conversation with Dr. Dusan Bogunovic 06.10.2026 56min

  Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20Will%20my%20genetic%20variant%20make%20me%20sick.pdf View a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20Will%20my%20genetic%20variant%20make%20me%20sick.pdf Dr. Dusan Bogunovic of Columbia University discusses genetic variants. To volunteer, donate, or learn more about the Immune Deficiency Foundation, visit https://primaryimmune.org/donate. 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.
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  Finding joy in advocacy with Rafhaela Vedia 17.09.2026 19min

  TRANSCRIPT: https://primaryimmune.org/sites/default/files/Transcript%20-%20Vedia.pdf Longtime Immune Deficiency Foundation advocate Rafhaela Vedia sits down with Rebecca Russ, the foundation's grassroots advocacy specialist, to discuss her journey with severe combined immune deficiency (SCID) and the fulfilment she gets from legislative advocacy. Your support helps make programming like this possible. To donate, visit www.primaryimmune.org/donate. 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.
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  Bold conversations: Disparaging language in patient records with Ilana Jacqueline 03.09.2026 47min

  Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20Disparaging%20language.pdf Author and creator Ilana Jacqueline joins Dr. Nicole to discuss the lasting impact of disparaging language sometimes used in patient records. https://ilanajacqueline.com/ https://yourgpsdoc.com/ Your support makes programming like this possible. Donate today to further our mission. www.primaryimmune.org/donate. 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.
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  Plasma donation myths with Professor Peter Jaworski 12.08.2026 19min

  Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20Jaworski%20interview.pdf Peter Jaworski is a professor of ethics at Georgetown University who shares a highly specific field of interest with the primary immunodeficiency community: Plasma donation. He devotes an enormous amount of his time to spreading awareness about global plasma supply, as well as to correcting the common misconceptions that stand in the way of creating effective plasma collection systems. This interview was conducted by longtime partner of the Immune Deficiency Foundation, Matthew Hombach of Nevins & Associates. Follow Professor Jaworski on Linkedin: https://www.linkedin.com/in/peter-jaworski-011a6877/ Your support makes programming like this possible. Donate today to further our mission. https://www.primaryimmune.org/donate. 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.
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  Voices of PI: Young adults at the 2026 National Conference 23.07.2026 17min

  Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPTION%20YA%20voices%20conference.pdf In June 2026, we interviewed young adults who attended the Immune Deficiency Foundation National Conference in San Antonio. Questions ranged in scope from joys and laughter to fears and worries. Your support of the Immune Deficiency Foundation makes content like this possible. To donate or volunteer, visit primaryimmune.org/donate. 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.
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  Long COVID & primary immunodeficiency with Dr. Manish Butte 16.06.2026 1t 3min

  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.
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  Primary immunodeficiency in 2026: New practice parameters, genetic testing, and what's changed for patients 27.05.2026 53min

  TRANSCRIPT: https://primaryimmune.org/sites/default/files/Transcript%20-%20Practice%20parameters.pdf On this episode of the Immune Deficiency Foundation podcast, Dr. Paula Henao and Katherine Lontok, Ph.D. (the Foundation's medical director and director of science and policy communications, respectively) discuss the highly anticipated practice parameters for primary immunodeficiency, or inborn errors of immunity. The new parameters, intended to guide clinicians in diagnosis and treatment decisions, are more comprehensive and holistic than ever before, and include topics such as genetic testing, newborn screening, mental health management, and much more. 2025 practice parameters: https://college.acaai.org/review-the-2025-inborn-error-of-immunity-iei-practice-parameter/ 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.
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  Every piece adds strength: Interactive art at the 2026 National Conference 05.05.2026 8min

  Transcript: https://primaryimmune.org/sites/default/files/Transcription%20-%20Art%20installations.pdf On this episode of the Immune Deficiency Foundation Podcast, Tammy Black and Elizabeth Ferguson (the organization's chief communications officer and director of events, respectively) discuss the interactive art installations that will be featured at this year's National Conference. To see and help create these one-of-a-kind art pieces in person, you can join us June 25-27 in San Antonio! Visit https://primaryimmune.org/conference to register now.
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  2026 National Conference: What to Expect in San Antonio 05.04.2026 13min

  Emma Mertens and Megan Messick discuss the Immune Deficiency Foundation's upcoming 2026 National Conference. Click here to register: https://web.cvent.com/event/098b166d-370c-4dda-b02e-f7d80d76a5c5/websitePage:190e3719-e947-4da1-8dc7-e18fd2abd955?environment=P2 Your support of the Immune Deficiency Foundation makes our content and events possible. Click here to donate: https://primaryimmune.org/donate 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.
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  "Make your own path as you walk." | CEO Jorey Berry introduces medical director Dr. Paula Henao 25.03.2026 35min

  TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Jorey%20and%20Paula.pdf On this episode, CEO Jorey Berry sits down with the foundation's new medical director, Dr. Paula Henao to discuss her career, her new role, and the state of immunology. 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 https://www.primaryimmune.org/donate to further our mission.
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  Exploring "Compromised: Life Without Immunity" | Behind the documentary 20.02.2026 1t 2min

  On February 27, the Immune Deficiency Foundation's first documentary feature ("Compromised: Life Without Immunity") will be available for all to watch on YouTube, free of charge. To celebrate, this podcast episode will feature a panel discussion amongst cast members Kim and Ben Everett, Yvette and Jerry Shorten, Victoria Medl, Shane Brisson, Dionne Stalling, and Ironmouse, who performed the film's theme song. The discussion is led by our foundation's Board Chair, Tracy Shaw. You can watch a video of this panel here: https://youtu.be/qKBjZRSBrl0 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.
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  Why PI affects the skin: Common rashes, infections, and immune dysregulation (dermatology deep dive) 03.02.2026 1t 32min

  TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20Dermatological%20issues%20podcast.pdf Dr. Alexandra Freeman and Dr. Heidi H. Kong discuss dermatological manifestations of 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. Your support of the Immune Deficiency Foundation makes programming like this possible. Visit https://primaryimmune.org/donate to further our mission. To view a PDF of this presentation, click here: https://primaryimmune.org/sites/default/files/For%20WEB%20-%20IDF_DermTalkJan13.pdf
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  Primary immunodeficiency & dental health: Protecting your mouth when your immune system is fragile 13.01.2026 1t 37min

  Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20PI%20and%20oral%20health.pdf Click here to view a a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20Oral_Health_Arce.pdf Dr. Roger Arce provides a presentation on the links between primary immunodeficiency and oral health. Join us June 25-27 for the 2026 PI Conference in San Antonio, TX! www.primaryimmune.org/conference. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. Your support of the Immune Deficiency Foundation makes programming like this possible. Visit primaryimmune.org/donate to further our mission.
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  Undiagnosed: Reuben & Sherri Johnson on CGD, chronic illness, and the fight for healthcare 17.12.2025 30min

  TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT.Undiagnosed.Reuben.pdf Reuben Johnson was diagnosed with chronic granulomatous disease, or CGD, at the age of ten. So much of his story takes place after his family had found some of the answers that are often elusive for others. Reuben learned early in life that joy is essential and simple. However, he would soon have to confront the cruelty of sickness and the cold realities of a medical system that either didn't understand him or didn't care. These things formed a perfect storm in the center of his life that threatened to wash away the joy that once came so easily to him. Find Reuben and Sherri on LinkedIn: https://www.linkedin.com/in/flyduo/ Your support of the Immune Deficiency Foundation helps ensure that people like Reuben get the education, advocacy, and support they deserve. To learn more about our mission and to 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.
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  Cancer risk in primary immunodeficiency (PI): Lymphoma, screening, and treatment explained 02.12.2025 1t 10min

  Transcript: https://primaryimmune.org/sites/default/files/Transcription%20-%20PI%20and%20cancer.pdf Dr. Charlotte Cunningham-Rundles provides a presentation on the link between primary immunodeficiency (PI) and cancer. 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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  Job Hunting With Primary Immunodeficiency: HR Advice on Disclosure, Accommodations & Benefits 24.11.2025 54min

  TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Job%20hunting%20with%20PI.pdf On this episode of ChronicXTwenties, Myles Temple joins Chris Duckett (Director of human resources at the Immune Deficiency Foundation) to discuss the ins and outs of job hunting with primary immunodeficiency. Myles's website: www.mylestemple.com Your support of the Immune Deficiency Foundation helps us spread the word about primary immunodeficiency and those who live with it. To support our work, please donate at 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.
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  How FOXP3 changed immunology: Tregs, IPEX, and the Nobel Prize explained 19.11.2025 35min

  TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20How%20FOXP3%20changed%20immunology.pdf Dr. Troy Torgerson (Allen Institute for Immunology, Immune Deficiency Foundation Medical Advisory Committee) and Katherine Lontok (Director of Science and Policy Communications, Immune Deficiency Foundation) discuss the Nobel Prize-winning research of Mary Brunkow, Fred Ramsdell and Shimon Sakaguchi. Find Dr. Torgerson on LinkedIn: https://www.linkedin.com/in/troy-torgerson-44b6207/ Your support of the Immune Deficiency Foundation helps us spread the word about primary immunodeficiency and those who live with it. To support our work, please donate at 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.
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  Bold Conversations: Food justice with Dr. Jennifer Oilver 03.11.2025 22min

  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.
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  Living well with PI: Caregiving for chronic illness 06.10.2025 1t 24min

  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/
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  Foundation Focus | September 2025 29.09.2025 3min

  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.