Listen "Episode 056 - Standing Up to ECD with Courage and Hope"
Episode Synopsis
Welcome to Episode 056 of the Beyond the Diagnosis Podcast. Listen in as Barry shares his courageous journey living with Erdheim-Chester Disease (ECD) and the hope he found through family, friends, and his medical team.
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:
· For more information on ECD: https://histio.org/histiocytic-disorders/erdheim-chester-disease/
· ECD Global Alliance: www.erdheim-chester.org
· For more information on the Ty Fighters 5K:
https://histio.org/get-involved/fundraising-events/
· Patient Registries Information:
o Histiocytosis Follow-Up Study: email [email protected]
o INTO-HLH Registry: www.hlhregistry.org
Disclaimer: Any references to specific people or healthcare providers do not represent the views or opinions of the Histiocytosis Association or Histiocyte Society.
· Follow the Histiocytosis Association on social
media:
§ Facebook: https://www.facebook.com/histio
§ Twitter: @histiocytosis
§ Instagram: histiocytosis_association
§ YouTube: https://www.youtube.com/histiocytosisassoc
Commercial Background Music: Cinematic Battle Music (Star Wars Style) Music by Luis Humanoide from Pixabay
“Wake Up to the Renaissance” Music by AudioCoffee from Pixabay
Ambient Inspiration” Music by The Mountain from Pixabay
Music: “Heroes” by Noah Smith
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:
· For more information on ECD: https://histio.org/histiocytic-disorders/erdheim-chester-disease/
· ECD Global Alliance: www.erdheim-chester.org
· For more information on the Ty Fighters 5K:
https://histio.org/get-involved/fundraising-events/
· Patient Registries Information:
o Histiocytosis Follow-Up Study: email [email protected]
o INTO-HLH Registry: www.hlhregistry.org
Disclaimer: Any references to specific people or healthcare providers do not represent the views or opinions of the Histiocytosis Association or Histiocyte Society.
· Follow the Histiocytosis Association on social
media:
§ Facebook: https://www.facebook.com/histio
§ Twitter: @histiocytosis
§ Instagram: histiocytosis_association
§ YouTube: https://www.youtube.com/histiocytosisassoc
Commercial Background Music: Cinematic Battle Music (Star Wars Style) Music by Luis Humanoide from Pixabay
“Wake Up to the Renaissance” Music by AudioCoffee from Pixabay
Ambient Inspiration” Music by The Mountain from Pixabay
Music: “Heroes” by Noah Smith
More episodes of the podcast Beyond the Diagnosis
Episode 077 - MEK Inhibitors in ECD
26/03/2025
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