Welcome to Episode 091 of the Beyond the Diagnosis Podcast. In this episode of Beyond the Diagnosis, Kathy sits down with hematologist Dr. Richard Godby from Mayo Clinic to explore the rapidly evolving role of artificial intelligence in rare disease and healthcare. Together, they unpack how AI is already helping patients and physicians navigate complex medical information, shorten diagnostic journeys, improve advocacy, and potentially accelerate research and treatment development. Dr. Godby also shares practical guidance on how patients and caregivers can begin using AI thoughtfully and responsibly while understanding its limitations, risks, and ethical considerations. Whether you’re curious, skeptical, or already experimenting with AI yourself, this conversation offers a fascinating and hopeful look at how technology may reshape the future of rare disease care. 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 [email protected].   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 Dr. Godby's presentation on AI for wAIHA Warriors hereFollow 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  

Welcome to Episode 090 of the Beyond the Diagnosis Podcast. In this heartfelt episode, Kristin Aaron shares the inspiring story of her son Jenson, whose joyful spirit sparked the Monkey Grins initiative, bringing smiles to children battling histiocytosis and their siblings. Despite the challenges of Langerhans cell histiocytosis (LCH), Jenson's legacy of love and resilience continues to uplift families worldwide. Discover how advocacy, community support, and simple acts of kindness can transform grief into a powerful force for good. Join us for a conversation that proves even the smallest gestures can make a world of difference. 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 [email protected].   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: Request a Monkey Grin Interested in donating to the Monkey Grins program?  You can do so here. Register for our Two-Part Webinar Series  A chance to learn, reflect, and feel supported-join us for one or both sessions. This two-part webinar series focuses on supporting your well-being while navigating care. Attend one or both sessions for practical insights and connections.   Register here for May 5th:  Emotional Balance in a World of Chronic Medical Stress  Register here for May 13th: Tools to Thrive: Everyday Habits for Healing and Whole-Body Wellness  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

Welcome to Episode 089 of the Beyond the Diagnosis Podcast. In this episode we sit down with 2024 Histio Student Scholarship recipient Brinda Shukla to hear her powerful journey from a Rosai-Dorfman Disease diagnosis at age 13 to pursuing a future in medicine. Brinda shares her personal story, what it was like to apply for and receive the scholarship, and how the experience has supported her academic and professional goals. 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 [email protected].   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: Histiocytosis Association Student Scholarship Program 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

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 [email protected].   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

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 [email protected].   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 

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 [email protected].   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 

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 [email protected].   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 

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 [email protected].   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  

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 [email protected].   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 

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 [email protected].   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