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.
Episode 095 - Utilize But Verify - AI in the Rare Disease Journey w/ Dr. Michael Henry
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 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:
Get more info on Histiocytosis Awareness Month: www.histio.org/getinvolved/raiseawareness (https://www.histio.org/getinvolved/raiseawareness)
Get involved in our Blue Ribbon Run! www.histio.org/blueribbonrun (https://www.histio.org/blueribbonrun)
Follow the Histiocytosis Association on social media:
Facebook: https://www.facebook.com/histio (https://www.facebook.com/histio)
Twitter: @histiocytosis
Instagram: histiocytosis_association
YouTube: https://www.youtube.com/@Histiocytosis (https://www.youtube.com/@Histiocytosis)
Music: “Heroes” by Noah Smith
26 Aug 2026
Episode 094 - The Power of AI in Drug Repurposing in RDD and Beyond w/ Dr. Luke Chen
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 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:
Dr. Fajgenbaum’s Book: Chasing My Cure: A Doctor’s Race to Turn Hope Into Action (https://www.amazon.com/Chasing-My-Cure-Doctors-Action/dp/1524799637/ref=sr_1_1?crid=2HY524S5WBSFC&dib=eyJ2IjoiMSJ9.J-HeqNOXzCfMq_ljgKQShSA5s3z3lFpQqTAdAGhnekmcVrp1ZhtObHpXgHOTeyaVsJCZUkzVL1YeCz5M8amfWb0pENvsTAsLreGaj9c9UV6Ge5lYohYxgtGdgwguFHo6ehB14VrhNR3IbC8CdASRUg.sbRVsaFxfHTSLjqqf8NonVTeNCuiqhcSJmvDxkV1f2s&dib_tag=se&keywords=chasing+my+cure&qid=1787745170&sprefix=chasing+my+cu%2Caps%2C189&sr=8-1)
Get more info on Histiocytosis Awareness Month: www.histio.org/getinvolved/raiseawareness (https://www.histio.org/getinvolved/raiseawareness)
Get involved in our Blue Ribbon Run! www.histio.org/blueribbonrun (https://www.histio.org/blueribbonrun)
Follow the Histiocytosis Association on social media:
Facebook: https://www.facebook.com/histio (https://www.facebook.com/histio)
Twitter: @histiocytosis
Instagram: histiocytosis_association
YouTube: https://www.youtube.com/@Histiocytosis (https://www.youtube.com/@Histiocytosis)
Music: “Heroes” by Noah Smith
22 Jul 2026
Episode 093 - Meet the Team: Staff Highlight Series w/ Kristen, Our Chief Program and Development Officer
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 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 (https://www.facebook.com/histio)
Twitter: @histiocytosis
Instagram: histiocytosis_association
YouTube: https://www.youtube.com/@Histiocytosis (https://www.youtube.com/@Histiocytosis)
Music: “Heroes” by Noah Smith
Reach and audience
Public platform figures. Ratings count people who left a rating, not total listeners.
YouTube views
251,746
Score snapshot 15 Sept 2025
Apple Podcasts (US)
5.0 / 5
3 ratings
Spotify
5.0 / 5
5 ratings
Podcast Authority Score: 49 / 100
A composite of feed quality, social presence, YouTube performance and engagement. Read the methodology.
Quality
50
Social presence
0
YouTube
86
Engagement
32
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