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Beyond the Diagnosis
Histiocytosis Association
85 episodes
5 days ago
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.
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All content for Beyond the Diagnosis is the property of Histiocytosis Association and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.
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.
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Episode 078 - From Misdiagnosis to Mission – One Patient’s Journey with Rare Disease
Beyond the Diagnosis
57 minutes 44 seconds
6 months ago
Episode 078 - From Misdiagnosis to Mission – One Patient’s Journey with Rare Disease

Welcome to Episode 078 of the Beyond the Diagnosis Podcast. Listen in as Hank shares his courageous journey from being misdiagnosed, to finding his purpose in life to help others affected by histiocytosis in the most practical of ways. Instead of allowing his diagnosis to define him, Hank found deep purpose in reaching out to fellow patients and caregivers, participating in clinical trials, and pushing for legislative change in the world of rare disease. Join us as Hank shares how his faith, resilience, and relentless hope are helping to shape a better future for others living with histiocytosis. 

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 

 

 

Resources mentioned in the podcast: 

  • Patient Registries Information: 

    • Histiocytosis Follow-Up Study: email histio@uabmc.edu or call 866-438-1640 
    • INTO-HLH Registry: www.hlhregistry.org 
  • 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 

    Beyond the Diagnosis
    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.