66 episodes
Beyond the Diagnosis Histiocytosis Association
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- Health & Fitness
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5.0 • 2 Ratings
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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. Support this podcast: https://podcasters.spotify.com/pod/show/histio/support
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Episode 065 - AVP-Deficiency Explained: Understanding and Managing a Rare Condition
Welcome to Episode 065 of the Beyond the Diagnosis Podcast. In this episode we’re talking with Pat Gildroy, lead administrator of the Facebook Group, “Got Arginine VasoPressin Deficiency?” about the resources, symptoms,
tests, and the patient experience for those living with Arginine Vasopressin Deficiency, formerly known as Diabetes Insipidus.
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:
App for tracking fluids: IUFLOW
UK Pituitary
Foundation
World Alliance of Pituitary Organizations (WAPO)
Raymond A. Wood Foundation
Facebook Group: Got Arginine Vasopressin Deficiency?
· Follow the Histiocytosis Association on social media:
Facebook: https://www.facebook.com/histio
Twitter: @histiocytosis
Instagram: histiocytosis_association
YouTube: https://www.youtube.com/@Histiocytosis
Music: “Heroes” by Noah Smith
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Support this podcast: https://podcasters.spotify.com/pod/show/histio/support -
Episode 064 - Voices of Dedication: Honoring Our Histio Volunteers
Welcome to Episode 064 of the Beyond the Diagnosis Podcast. In honor of Volunteer Appreciation Month, join us for a special episode dedicated to celebrating the
incredible contributions of our devoted volunteers and Ambassadors. Tune in as we sit down with two of our Ambassadors who generously share their volunteer
journey and the impactful initiatives they're championing in their commitment to the histiocytosis cause. Get inspired by their selfless dedication and passion as they continue to make a difference in the lives of those affected by histio.
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:
Rare Disease Legislative Advocates (RDLA) -
https://everylifefoundation.org/rare-advocates/
Histiocytosis Association Ambassador Program: https://histio.org/histio-ambassadors/ or email Melinda at matnip@histio.org
Follow the Histiocytosis Association on social media:
Facebook: https://www.facebook.com/histio
Twitter: @histiocytosis
Instagram: histiocytosis_association
YouTube: https://www.youtube.com/@Histiocytosis
Music: “Heroes” by Noah Smith
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Support this podcast: https://podcasters.spotify.com/pod/show/histio/support -
Episode 063 - Heartbeats of Hope: The Histio Caregiver
Welcome to Episode 063 of the Beyond the Diagnosis Podcast. In this episode we hear about the caregiver experience from Histio Ambassador and mom to a histio warrior, Barb Adams. She is sharing an honest and encouraging perspective which will leave you with hope and encouragement for your own histio journey.
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:
Histio Hike Shenandoah: www.histiohikeshenandoah.com
Histiocytosis Association Ambassador Program: https://histio.org/histio-ambassadors/ or email Melinda at matnip@histio.org
Follow the Histiocytosis Association on social media:
Facebook: https://www.facebook.com/histio
Twitter: @histiocytosis
Instagram: histiocytosis_association
YouTube: https://www.youtube.com/@Histiocytosis
Music: “Heroes” by Noah Smit
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Support this podcast: https://podcasters.spotify.com/pod/show/histio/support -
Episode 062 - From Adversity to Opportunity
Welcome to Episode 062 of the Beyond the Diagnosis Podcast. In this episode we’re talking with 2 histio patients diagnosed as children to learn about their inspirational stories of turning their adversity into opportunities and the ripple effect that this can have on others facing their own adversity.
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:
Giving Rocks Foundation: https://givingrocksfoundation.org/
National Marrow Donor Program (Formerly
Be the Match): https://bethematch.org/
Brand New Histiocytosis Association Youth
Ambassador Program: https://histio.org/histio-ambassadors/ or email Melinda at matnip@histio.org
Follow the Histiocytosis Association on social
media:
§ Facebook: https://www.facebook.com/histio
§ Twitter: @histiocytosis
§ Instagram: histiocytosis_association
§ YouTube: https://www.youtube.com/@Histiocytosis
Music: “Heroes” by Noah Smith
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Support this podcast: https://podcasters.spotify.com/pod/show/histio/support -
Episode 061 - The Fruits of Our Labor – Joining Together to Fund Research
Welcome to Episode 061 of the Beyond the Diagnosis Podcast. Deanna Fournier joins us again, this time with Claudio DiGirolamo, President and Director of the Histiocytosis Association of Canada, to talk about coming together to fund research and the power of international collaboration.
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:
Histiocytosis Association of Canada: https://histiocytosis.ca/
Beyond the Diagnosis Episode 027 – Part 1 of 3: Seeds of Funding – The
Foundation of the Research Grant Program
Beyond the Diagnosis Episode 048 – Part 2 of 3: Cultivating the Seeds of Research: Understanding the Scoring Process
Follow the Histiocytosis Association on social
media:
§ Facebook: https://www.facebook.com/histio
§ Twitter/X: @histiocytosis
§ Instagram: histiocytosis_association
§ YouTube: https://www.youtube.com/@Histiocytosis
Music: “Heroes” by Noah Smith
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Support this podcast: https://podcasters.spotify.com/pod/show/histio/support -
Episode 060 – Navigating Histiocytosis from a Neuropsychological Perspective
Additional Show Notes:
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:
Siegel Rare Neuroimmune Association (SRNA)-
https://wearesrna.org/
Book: Smart But Scattered Book Series: https://www.amazon.com/s?k=smart+but+scattered&crid=3FITW3A7C3ZRH&sprefix=smart+but+scattered%2Caps%2C256&ref=nb_sb_noss_1
Follow the Histiocytosis Association on social
media:
§ Facebook: https://www.facebook.com/histio
§ Twitter: @histiocytosis
§ Instagram: histiocytosis_association
§ YouTube:
Music: “Heroes” by Noah Smith
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Support this podcast: https://podcasters.spotify.com/pod/show/histio/support