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

23/04/2025 57 min

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

Episode Synopsis

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 [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.  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 [email protected] 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 

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