Podcast

Beyond The Diagnosis

A podcast that goes beyond a histiocytic disorders diagnosis

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

Our vision for the Beyond the Diagnosis podcast is to extend our reach farther and wider and be able to get important, timely, and relevant health and lifestyle information to the Histio Community.  We strive to explore topics that are “beyond the diagnosis,” or on the outer edge of what one would expect to hear from a rare disease podcast. We want to answer the lifestyle and overall health questions that you have - and the ones you didn’t know you had.

Tune-in with our Beyond the Diagnosis host, Kathy, and special guests! Listen below or on one of the following popular podcast streaming services: Apple, Spotify, Google, Breaker, Pocket, and RadioPublic.

Episode 80 – Histio Patient and Family Summit – Your Guide to this Exciting Event

June 25, 2025 Comments Off on Episode 80 – Histio Patient and Family Summit – Your Guide to this Exciting Event

In this conversation, we are discussing the upcoming Histio Patient and Family Summit, highlighting its significance in fostering education, connection, and support within the histiocytosis community. Join us as we…

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Episode 079: Approach to the Patient: From Endocrinopathy to the Diagnosis of a Histiocytic Disorder

May 28, 2025 Comments Off on Episode 079: Approach to the Patient: From Endocrinopathy to the Diagnosis of a Histiocytic Disorder

Drawing from a recent webinar, Drs. Polyzois Makris and Gaurav Goyal join us to explore their research and the critical role endocrinologists play in recognizing symptoms early, guiding diagnosis, and…

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Episode 078 – From Misdiagnosis to Mission – One Patient’s Journey with Rare Disease

April 23, 2025 Comments Off on Episode 078 – From Misdiagnosis to Mission – One Patient’s Journey with Rare Disease

In this episode, Ambassador Hank Heren shares his courageous journey from being misdiagnosed, to finding his purpose in life to help others affected by histiocytosis in the most practical of…

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Episode 077 – MEK Inhibitors in ECD –MEK Inhibitors in ECD

March 26, 2025 Comments Off on Episode 077 – MEK Inhibitors in ECD –MEK Inhibitors in ECD

In this episode, we’re chatting with Drs. Goyal, Abeykoon, and Acosta-Medina about their study on MEK inhibitors and what it means for patients. Plus, we’ll dive into how genetic mutations…

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Episode 076 – Meet the Team: Staff Highlight Series with Erica, Our Database Guru

February 26, 2025 Comments Off on Episode 076 – Meet the Team: Staff Highlight Series with Erica, Our Database Guru

In this episode we’re bringing you the third in our “Meet the Team,” series where we introduce you to the dedicated individuals working behind the scenes of the Histiocytosis Association.…

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