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    Health

    Immune Deficiency Foundation

    This podcast is a service of the Immune Deficiency Foundation — a nonprofit organization dedicated to improving the diagnosis, treatment, and quality of life of people diagnosed with primary immunodeficiency, or PI.

    “Bold Conversations” is a program that explores the harsh realities of health access in the United States. Hosted by Dr. Nicole Rochester.

    “Undiagnosed” is a narrative docuseries on that tells the true stories of PI patients and their long journeys to proper diagnosis and treatment.

    To learn more about primary immunodeficiency, the PI community, or to support the foundation as a donor or volunteer, please visit our website at www.primaryimmune.org. If you have any questions you would like to be answered, email us at idf@primaryimmune.org.

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    Latest Episodes:
    Why some people with genetic variants never get sick: A conversation with Dr. Dusan Bogunovic Oct 06, 2026
    Show notes

    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.

    Finding joy in advocacy with Rafhaela Vedia Sep 17, 2026
    Show notes

    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.

    Bold conversations: Disparaging language in patient records with Ilana Jacqueline Sep 03, 2026
    Show notes

    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.

    Plasma donation myths with Professor Peter Jaworski Aug 12, 2026
    Show notes

    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.

    Voices of PI: Young adults at the 2026 National Conference Jul 23, 2026
    Show notes

    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.

    Long COVID & primary immunodeficiency with Dr. Manish Butte Jun 16, 2026
    Show notes

    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.

    Primary immunodeficiency in 2026: New practice parameters, genetic testing, and what's changed for patients May 27, 2026
    Show notes

    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.

    Every piece adds strength: Interactive art at the 2026 National Conference May 05, 2026
    Show notes

    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.

    2026 National Conference: What to Expect in San Antonio Apr 05, 2026
    Show notes

    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.

    "Make your own path as you walk." | CEO Jorey Berry introduces medical director Dr. Paula Henao Mar 25, 2026
    Show notes

    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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