Beyond the Diagnosis

Histiocytosis Association
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The Beyond the Diagnosis podcast was created by the Histiocytosis Association to give patients, families, caregivers and other members of the Histio Community the opportunity to have access to another educational resource to help them on their histio journey. The podcast provides an additional platform by which listeners can consume information while on the go or if unable to remain in front of a computer for an extended period of time.

  1. 2D AGO

    Episode 088 - From Patient to Advocate – A Youth Voice for Rare Disease Week 2026

    Welcome to Episode 088 of the Beyond the Diagnosis Podcast. During Rare Disease Week 2026, we’re shining a spotlight on something that moves our community forward in powerful ways: advocacy.  On this episode we sit down with Nate Saelinger — a Histiocytosis Youth Ambassador, high school sophomore, and passionate advocate — who went to Capitol Hill to participate in Rare Disease Week with the EveryLife Foundation for Rare Diseases.  Diagnosed with Langerhans Cell Histiocytosis as a child and continuing to manage diabetes insipidus, Nate is using his voice to help shape conversations around research funding, policy, access to medication and the future of rare disease care.  His story is a powerful reminder that advocacy has no age limit — and that sharing lived experience can drive real change.  Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at podcast@histio.org.    Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!   Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.     Resources mentioned in the podcast:  Rare Disease Week with Every Life Foundation  Follow the Histiocytosis Association on social media:  Facebook: https://www.facebook.com/histio  Twitter: @histiocytosis  Instagram: histiocytosis_association  YouTube: https://www.youtube.com/@Histiocytosis    Music: “Heroes” by Noah Smith

    31 min

  2. JAN 28

    Episode 087 - Cyclin D1 Overexpression in Erdheim-Chester Disease

    Welcome to Episode 087 of the Beyond the Diagnosis Podcast. In this episode Kathy welcomes Dr. Karen Rech from the Mayo Clinic to discuss her groundbreaking research on Erdheim-Chester Disease (ECD). The conversation delves into the challenges of diagnosing ECD, highlighting the significance of cyclin D1 overexpression as a potential marker. Dr. Rech explains how this discovery aids in distinguishing ECD from other histiocytic neoplasms and reactive infiltrates, offering hope for quicker and more accurate diagnoses and emphasizes the importance of multidisciplinary collaboration and the advancements in understanding ECD, providing valuable insights for both clinicians and patients.  Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at podcast@histio.org.    Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!    Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.     Resources mentioned in the podcast:  Read the abstract Cyclin D1 Overexpression With Cytoplasmic Localization Distinguishes Erdheim-Chester Disease From Reactive Histiocytic Infiltrates here: The American Journal of Surgical Pathology  Follow the Histiocytosis Association on social media:  Facebook: https://www.facebook.com/histio  Twitter: @histiocytosis  Instagram: histiocytosis_association  YouTube: https://www.youtube.com/@Histiocytosis    Music: “Heroes” by Noah Smith

    22 min

  3. 12/31/2025

    Episode 086 - The 2025 Hopecast!

    Welcome to Episode 086 of the Beyond the Diagnosis Podcast.  Come along with us in this episode as we share a replay of the HopeCast, originally broadcast on Giving Tuesday 2025.  Filled with stories, accomplishments and a look ahead, this is an episode that is sure to provide much hope for the future.  Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at podcast@histio.org.    Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!    Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.    Resources mentioned in the podcast:    Watch the full Hopecast 2023 here: https://www.youtube.com/live/YBAGz22cujE?si=OSc8Aq_r3aaEQlh2  Learn more about the Histio Ambassador Program here: https://histio.org/histio-ambassadors/  Podcast episodes 27 and 48 that talk about our research grant program:  Episode 27 – Seeds of Funding: The Foundation of the Research Grants Program  Episode 48 – Cultivating the Seeds of Research: Understanding the Scoring Process  Learn all about the Histiocyte Society here: https://histiocytesociety.org   To make a year end gift to help the Association keep doing the important work that we’re doing, go to www.histio.org and click on the big green “Donate” button in the upper right.  Follow the Histiocytosis Association on social media:  Facebook: https://www.facebook.com/histio  Twitter: @histiocytosis  Instagram: histiocytosis_association  YouTube: https://www.youtube.com/histiocytosisassoc    Music: “Heroes” by Noah Smith  Sound effects from Pixabay

    1h 5m

  4. 11/26/2025

    Episode 085 - A Season for Gratitude

    Welcome to Episode 085 of the Beyond the Diagnosis Podcast. It’s that time of year where all thoughts shift to gratitude and we wanted to take a moment to express our thankfulness to our histio community for all you do throughout the year!  Join Kathy for this heartfelt message of thanksgiving and hope.  Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at podcast@histio.org.    Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!    Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.     Resources mentioned in the podcast:  Make your year-end gift: www.histio.org/give2025   Histiocytosis Association mailing address: 332 N Broadway, Pitman, NJ 08071  Don’t forget to tune in for the Hopecast, Tuesday, December 2 at 7:00pm Eastern Time.  We will be streaming live on YouTube, Facebook and Instagram!  Follow the Histiocytosis Association on social media:  Facebook: https://www.facebook.com/histio  Twitter: @histiocytosis  Instagram: histiocytosis_association  YouTube: https://www.youtube.com/@Histiocytosis    Music: “Heroes” by Noah Smith

    13 min

  5. 10/22/2025

    Episode 084 - Meet the New Histiocyte Society President, Dr. Vasanta Nanduri

    Welcome to Episode 084 of the Beyond the Diagnosis Podcast. In this episode we’re introducing you to the brand new President of the Histiocyte Society, Dr. Vasanta Nanduri.  We talk about how she got involved in medicine, her history with the Society and her vision for the future.  If you like keeping up on all things histio, this is an episode not to be missed! Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at podcast@histio.org.    Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!    Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.    Resources mentioned in the podcast:  Learn more about the Histiocyte Society’s Strategic Plan  Follow the Histiocytosis Association on social media:  Facebook: https://www.facebook.com/histio  Twitter: @histiocytosis  Instagram: histiocytosis_association  YouTube: https://www.youtube.com/@Histiocytosis    Music: “Heroes” by Noah Smith

    51 min

  6. 09/24/2025

    Episode 083 - Staff Highlight Series - Meet Our New Executive Director, Jen Silvers

    Welcome to Episode 083 of the Beyond the Diagnosis Podcast. In this episode we’re introducing you to the Histiocytosis Association’s brand new Executive Director, Jen Silvers, as we continue on in our staff highlight series!  Listen in as we learn about Jen’s hobbies, background and what led her to this role.  You might find yourself surprised!  Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at podcast@histio.org.    Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!    Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.    Resources mentioned in the podcast:  Follow the Histiocytosis Association on social media:  Facebook: https://www.facebook.com/histio  Twitter: @histiocytosis  Instagram: histiocytosis_association  YouTube: https://www.youtube.com/@Histiocytosis    Music: “Heroes” by Noah Smith

    30 min

  7. 08/27/2025

    Episode 082 - Continuing Medical Education and the Patient Voice

    Welcome to Episode 082 of the Beyond the Diagnosis Podcast. In this episode, we’re exploring the personal journeys of patients and families navigating the complex world of HLH and delving into the transformative power of collaboration between organizations dedicated to advancing physician education on rare diseases. Tune in to learn how as the patient voice is brought into the conversation, these collaborative efforts are shaping the future of healthcare and the opportunity we had to partner with NORD and Sobi to create a course through MedLive that provides continuing medical education to physicians all over the world. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at podcast@histio.org.    Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!    Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.    Resources mentioned in the podcast:  Access the CME Course  Sign up for the Histio Blue Ribbon Run    Follow the Histiocytosis Association on social media:  Facebook: https://www.facebook.com/histio  Twitter: @histiocytosis  Instagram: histiocytosis_association  YouTube: https://www.youtube.com/histiocytosisassoc    Music: “Heroes” by Noah Smith  Sound effects from Pixabay

    55 min

  8. 07/23/2025

    Episode 081 - Meet the Team: Behind the Scenes with Kathy, the Histiocyte Society Secretariat and More!

    Welcome to Episode 081 of the Beyond the Diagnosis Podcast. In this conversation, we turn the spotlight on the voice behind Beyond the Diagnosis. With nearly 17 years at the Histiocytosis Association, Kathy Wisniewski discusses her multifaceted role, including managing the research grant program, planning the Histiocyte Society annual meeting, and her passion for podcasting. Fueled by her own experience with rare disease, Kathy emphasizes the importance of community, collaboration, and the impact of her work on patients and families affected by histiocytosis.    Additional Show Notes:  Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at podcast@histio.org.    Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!    Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.    We would love it if you would consider supporting this podcast financially so we can continue to bring you relevant and timely information while on your histio journey.  To learn more visit https://podcasters.spotify.com/pod/show/histio/support    Don’t miss out on the Histiocytosis Association’s Patient & Family Summit coming up in September.  For more information and to register, visit 2025 Histiocytosis Summit | Histiocytosis Association    Interested in learning more about the North American Consortium for HistiOcytosis (NACHO)?  Take a listen to this early episode of Beyond the Diagnosis.    Resources mentioned in the podcast:  Follow the Histiocytosis Association on social media:  Facebook: https://www.facebook.com/histio  Twitter: @histiocytosis  Instagram: histiocytosis_association  YouTube: https://www.youtube.com/@Histiocytosis    Music: “Heroes” by Noah Smith

    1h 6m
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3 Ratings

About

The Beyond the Diagnosis podcast was created by the Histiocytosis Association to give patients, families, caregivers and other members of the Histio Community the opportunity to have access to another educational resource to help them on their histio journey. The podcast provides an additional platform by which listeners can consume information while on the go or if unable to remain in front of a computer for an extended period of time.

Information

  • Creator
    Histiocytosis Association
  • Years Active
    2021 - 2026
  • Episodes
    89
  • Rating
    Explicit
  • Copyright
    © Histiocytosis Association
  • Show Website
    Beyond the Diagnosis