Beyond the Diagnosis

Welcome to Episode 095 of the Beyond the Diagnosis Podcast. Artificial intelligence is changing the way we find, understand, and use medical information—but what does that mean for people living with rare disease? In this episode, Kathy talks with Dr. Michael Henry about the role AI can play in the rare disease journey, from helping patients make sense of complex information and prepare for conversations with their healthcare providers to navigating the uncertainty of a diagnostic odyssey. They also explore an important question: How do we use AI without allowing it to replace the expertise, experience, and relationship at the heart of good medical care? This isn't about blindly trusting AI—or dismissing it. It's about learning how to question, verify, and use this rapidly evolving technology thoughtfully as another tool in the rare disease toolbox. 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: Get more info on Histiocytosis Awareness Month: www.histio.org/getinvolved/raiseawareness Get involved in our Blue Ribbon Run! www.histio.org/blueribbonrun 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 091 of the Beyond the Diagnosis Podcast. Artificial intelligence is opening new possibilities in rare disease research, but what happens when we combine that technology with clinical experience, research, and a willingness to think differently? In this episode, Kathy talks with Dr. Luke Chen, a hematologist and Professor of Medicine at Dalhousie University and an advisor to Every Cure, about the power of drug repurposing and what it could mean for patients with Rosai-Dorfman disease and other rare diseases. Dr. Chen explains how Every Cure uses machine learning to identify promising connections between existing medications and diseases, and how that work, combined with clinical experience, helped elevate lenalidomide and dexamethasone as a treatment option for RDD. They also discuss what it means for this combination to become a preferred treatment in the NCCN Guidelines, particularly for patients who may have limited access to other therapies. Most importantly, this conversation offers a hopeful reminder that progress in rare disease can come from looking at the tools we already have in new ways—and that there is still tremendous potential to uncover. 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: Dr. Fajgenbaum’s Book: Chasing My Cure: A Doctor’s Race to Turn Hope Into Action Get more info on Histiocytosis Awareness Month: www.histio.org/getinvolved/raiseawareness Get involved in our Blue Ribbon Run! www.histio.org/blueribbonrun 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 093 of the Beyond the Diagnosis Podcast. In this episode Kathy sits down with Kristen Nesensohn, Chief Program and Development Officer at the Histiocytosis Association, to talk about her journey, her many roles, and the impact of her work on the histio community. Kristen shares how she first found her way to the organization, what it means to support patients, families, fundraising, and outreach, and why she feels so connected to the people she serves. They also discuss the importance of community events, regional education meetings, and the role of donors in making programs possible. It’s a heartfelt conversation about hope, connection, and the progress being made behind the scenes. 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 092 of the Beyond the Diagnosis podcast! In this episode we’re exploring the often-overlooked mental health impact of rare disease across every stage of the journey, from the uncertainty before diagnosis to treatment, remission, and beyond. Licensed social worker Doris Dahdouh joins us to discuss the emotional realities patients, caregivers, and siblings face, including anxiety, grief, guilt and isolation, while offering practical ways to cope through clear communication, intentional support, daily routines, gratitude, and peer connection. The conversation is compassionate, validating, and deeply practical, reminding listeners that feeling overwhelmed is normal and that no one has to navigate rare disease alone. 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 our Peer Support Groups at www.histio.org/resource-overview/peer-connection 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 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 here 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