Beyond the Diagnosis

By Histiocytosis Association

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... more

· Health & Fitness

5

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FAQs about Beyond the Diagnosis:

How many episodes does Beyond the Diagnosis have?

The podcast currently has 95 episodes available.

Beyond the Diagnosis episodes:

November 23, 2022Episode 024 - Family Group Collaborations - Working Together At Home and Abroad
Welcome to Episode 024 of the Beyond the Diagnosis Podcast. In this episode Kathy talks with Dora Moustaka from Histio Hellas in Greece and Fernando Gotz from the OR Asociacion in Spain about their experience at the Histiocyte Society Annual Meeting in Stockholm and their hopes for the ongoing international family group 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 [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.
Resources mentioned in the podcast:
· Histiocytosis Hellas Website: www.histioartemis.org
· OR Associacion Website: http://www.orasociacion.org/
· Histio caregiver workshops:
Caregiver Workshop:
11/21        7:00-8:30pm (EST) - register here

12/3        11:00-12:30pm (EST) - register here

12/15        3:00-4:30pm (EST) - register here

Peer Support       Calls:
November Sessions
HLH: 11/22 5:00-6:00pm (EST) - register here

LCH: 11/29 5:00-6:00pm (EST) - register here

December Sessions
All are welcome: 11/13 7:00-8:00pm EST - register here

All are welcome: 11/22 3:00-4:00pm EST - register here

· For more information about the November 29 Hopecast, follow us on social media or reach out to [email protected]
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
...more
56min
October 26, 2022Episode 023 - Focus on the Future w/ New Histiocyte Society President, Kim Nichols
Welcome to Episode 023 of the Beyond the Diagnosis Podcast. In this episode Kathy talks with Dr. Kim Nichols, the new President of the Histiocyte Society, and learns about her visions and goals for the next 3 years.
Are you looking for an opportunity to connect with other patients and families, as well as have access to essential medical and research information presented by leading histio physicians? Join us on November 10th and 11th for a Patient-Family Conference on Histiocytic Disorders in Memphis, Tennessee! This 1 1/2 day event will cover all histiocytic disorders and is beneficial for both adult & pediatric patients; there will also be a continued medical education opportunity for medical professionals, and talks on clinical trial and registry opportunities, emotional/mental wellness, transitioning care and finding a specialist, and networking opportunities both with histio experts as well as other patients and families. Can't join us in person? You can tune in virtually as well and will be able to engage with us in the discussion! Registration is required; visit www.histio.org/nationalconference to learn more and save your seat. See you there!
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.
Resources mentioned in the podcast:
Histioctye Society Website: www.histiocytesociety.org

Follow the Histiocyte Society on Twitter!: @HistiocyteSoc

Practice Point: www.practicepointcme.com
In memory of Dr. Robert Arceci: 1950-2015
Music: “Heroes” by Noah Smith
...more
51min
September 28, 2022Episode 022 - Exciting Updates from Our 2021 Grant Recipients
Welcome to Episode 022 of the Beyond the Diagnosis Podcast. In this episode Kathy talks with 3 of the Association’s 2021 grant recipients about how they came up with their projects, what the grant application process was like for them and where their research stands today.
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.
Resources mentioned in the podcast:
www.histio.org/research

Dr. Abagnale’s Research Project: https://histio.org/grants/modeling-langerhans-cell-histiocytosis-with-patient-derived-ipscs/

Dr. Chandra’s Research Project: https://histio.org/grants/identifying-novel-csf-biomarkers-for-the-diagnosis-of-isolated-cns-hemophagocytic-lymphohistiocytosis/

Dr. Sepulveda’s Research Project:https://histio.org/grants/role-of-the-immune-checkpoint-tim-3-in-the-pathogenesis-of-non-classical-hlh/
www.histio.org/get-involved/fundraising-events
...more
1h 7min
August 24, 2022 Episode 021 - Rolling and Running Into September
Welcome to Episode 021 of the Beyond the Diagnosis Podcast. In this episode Kathy talks with 3 of the Association’s new Ambassadors about the events they are planning for Awareness Month. Come roll and run into September with us!
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. Resources mentioned in the podcast:

Resources mentioned in the podcast:
- National Organization for Rare Disorders (NORD): www.rarediseases.org
- Histiocytosis Association Awareness Info: https://histio.org/get-involved/raise-awareness/
- Histiocytosis Association Fundraising/Awareness Events Info: https://histio.org/get-involved/fundraising-events/
- Hashtags to use for the Bridge to a Cure runs: #histioblueribbonrun #histiorunchallenge #histiocytosisawareness #iknowhistio
Music: “Heroes” by Noah Smith
...more
42min
July 27, 2022 Episode 020 - Work Beyond the Diagnosis: A Conversation with Cancer and Careers
Welcome to Episode 020 of the Beyond the Diagnosis Podcast. In this episode Kathy has a conversation with Rachel Becker, Deputy Director of Cancer and Careers, about the many useful resources the organization can provide to help with the issues that live at the intersection of a cancer diagnosis and work.
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.
Resources mentioned in the podcast:
- Cancer and Careers website: www.cancerandcareers.org
- Balancing Work and Caregiving webinar: https://www.cancerandcareers.org/en/community/events/webinar-caregivers
- For an appointment to speak with a career councilor email [email protected]
- To get your copy of the Living and Working with Cancer Workbook: https://www.cancerandcareers.org/publication_orders/new
- Workplace Transitions: https://www.workplacetransitions.org/
- For more information about the HLH Awareness Charity Golf Outing, email [email protected]
- To access the Histiocytosis Association Online Yoga Studio: https://histio.org/resource-overview/yoga-for-histio/
Music: “Heroes” by Noah Smith
...more
52min
July 15, 2022 Episode 019 - BONUS: A 2022 Mid-Year Update from the Histiocytosis Association
Welcome to Episode 019 of the Beyond the Diagnosis Podcast. In this mini-episode Kathy welcomes back Deanna Fournier, Executive Director of the Histiocytosis Association a mid-year update on what the Association has accomplished so far in 2022. If you’re curious about the exciting things that Association has been working on so far this year, then you don’t want to miss this episode!
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!
Resources mentioned in the podcast:
· Fundraising Events: https://histio.org/get-involved/fundraising-events/
· International Family Group Organizations: https://histio.org/resources_categories/international-histio-organization/
· HA Resource Overview: https://histio.org/resource-overview/
· HA Education and Connection: https://histio.org/resource-overview/education-connection/
· HA Scholarship Program: https://histio.org/resource-overview/scholarship-program/
...more
42min
June 22, 2022Episode 018 - Beauty From Ashes - Channeling Grief to Make a Difference w/ Histio Spouse Michelle Phay
Welcome to Episode 017 of the Beyond the Diagnosis Podcast. In this episode Kathy speaks with Michelle Phay, wife of Dave Phay, who lost his life to HLH in 2018. Michelle talks about their experience with the disease, how she navigated through tests, treatments and over 27 different erroneous diagnoses, and how her grief fuels her to fulfill Dave’s 3 parting wishes.
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.
Resources mentioned in the podcast:
Grief Resources: www.griefresourcenetwork.com

Histio Physicians Directory: https://histio.org/resource-overview/histio-physician-directory/
Music: “Heroes” by Noah Smith
...more
1h 20min
May 25, 2022Episode 017 - History Firsthand - An Account of the Origins of the Histiocytosis Association w/ Jeff Toughill
Welcome to Episode 017 of the Beyond the Diagnosis Podcast. In this episode Kathy has the privilege of speaking with Jeff Toughill, Founder of the Histiocytosis Association and President until just a few short years ago to hear firsthand the inspiration behind the Association, how it started, how it grew and his vision for his very important legacy.
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.
Resources mentioned in the podcast:
1987 Family Circle Article: https://histio.org/about/organizational-history/

For information on open clinical trials: www.clinicaltrials.gov

Histiocyte Society: www.histiocytesociety.org

Histio Physicians Directory: https://histio.org/resource-overview/histio-physician-directory/

Yoga for Histio Classes: https://histio.org/resource-overview/yoga-for-histio/
Music: “Heroes” by Noah Smith
...more
44min
April 27, 2022Episode 016 - Introducing the Histiocytosis Association's Ambassador Program
Welcome to Episode 016 of the Beyond the Diagnosis Podcast. In this episode Kathy talks with 2 Association staff members and 2 of our volunteer Ambassadors about the recently launched Histiocytosis Association Ambassador Program. Come get all your questions answered about what the program is, what it means and how you can get involved!
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.
Resources mentioned in the podcast:
Histio Ambassador Program: https://histio.org/ambassador-volunteer-program/

Histio Ambassador Profile: https://histio.org/wp-content/uploads/2022/02/Final-Draft_-Histio-Ambassador-Profile.pdf
If you’d like to get more information about the Ambassador Program, reach out to [email protected].
We would like to recognize and thank Investor’s Bank Foundation for providing the sponsorship necessary to make the Ambassador Program possible.
Investor’s Bank Foundation: https://www.investorsbank.com/about-us/community/investors-foundation
Music: “Heroes” by Noah Smith
...more
54min
March 23, 2022 Episode 015 - Erdheim-Chester Disease – Information, Resources and Hope from the Experts
Welcome to Episode 015 of the Beyond the Diagnosis Podcast. In this episode Kathy talks with a panel of 4 experts on ECD – 2 physicians and 2 representatives from the ECD Global Alliance to talk about advancements in disease diagnosis, various resources available to ECD patients, families and caregivers, and hope for the future.
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.
Resources mentioned in the podcast:
Erdheim-Chester Disease Global Alliance: https://erdheim-chester.org
ECD Care Centers: https://erdheim-chester.org/care-centers/
Histiocytosis Association Physician’s Directory: https://histio.org/resource-overview/histio-physician-directory/
Music: “Heroes” by Noah Smith
...more
51min

FAQs about Beyond the Diagnosis:

How many episodes does Beyond the Diagnosis have?

The podcast currently has 95 episodes available.