Welcome to Episode 084 of the Beyond the Diagnosis Podcast. In this episode we’re introducing you to the brand new President of the Histiocyte Society, Dr. Vasanta Nanduri. We talk about how she got involved in medicine, her history with the Society and her vision for the future. If you like keeping up on all things histio, this is an episode not to be missed! 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.
Resources mentioned in the podcast:
Learn more about the Histiocyte Society’s Strategic Plan
Follow the Histiocytosis Association on social media:
Facebook: https://www.facebook.com/histio
Twitter: @histiocytosis
Instagram: histiocytosis_association
Music: “Heroes” by Noah Smith
Welcome to Episode 083 of the Beyond the Diagnosis Podcast. In this episode we’re introducing you to the Histiocytosis Association’s brand new Executive Director, Jen Silvers, as we continue on in our staff highlight series! Listen in as we learn about Jen’s hobbies, background and what led her to this role. You might find yourself surprised!
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.
Resources mentioned in the podcast:
Follow the Histiocytosis Association on social media:
Facebook: https://www.facebook.com/histio
Twitter: @histiocytosis
Instagram: histiocytosis_association
Music: “Heroes” by Noah Smith
Welcome to Episode 082 of the Beyond the Diagnosis Podcast. In this episode, we’re exploring the personal journeys of patients and families navigating the complex world of HLH and delving into the transformative power of collaboration between organizations dedicated to advancing physician education on rare diseases. Tune in to learn how as the patient voice is brought into the conversation, these collaborative efforts are shaping the future of healthcare and the opportunity we had to partner with NORD and Sobi to create a course through MedLive that provides continuing medical education to physicians all over the world. 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.
Resources mentioned in the podcast:
Sign up for the Histio Blue Ribbon Run
Follow the Histiocytosis Association on social media:
Facebook: https://www.facebook.com/histio
Twitter: @histiocytosis
Instagram: histiocytosis_association
Music: “Heroes” by Noah Smith
Sound effects from Pixabay
Welcome to Episode 081 of the Beyond the Diagnosis Podcast. In this conversation, we turn the spotlight on the voice behind Beyond the Diagnosis. With nearly 17 years at the Histiocytosis Association, Kathy Wisniewski discusses her multifaceted role, including managing the research grant program, planning the Histiocyte Society annual meeting, and her passion for podcasting. Fueled by her own experience with rare disease, Kathy emphasizes the importance of community, collaboration, and the impact of her work on patients and families affected by histiocytosis.
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
Don’t miss out on the Histiocytosis Association’s Patient & Family Summit coming up in September. For more information and to register, visit 2025 Histiocytosis Summit | Histiocytosis Association
Interested in learning more about the North American Consortium for HistiOcytosis (NACHO)? Take a listen to this early episode of Beyond the Diagnosis.
Resources mentioned in the podcast:
Follow the Histiocytosis Association on social media:
Facebook: https://www.facebook.com/histio
Twitter: @histiocytosis
Instagram: histiocytosis_association
Music: “Heroes” by Noah Smith
Welcome to Episode 080 of the Beyond the Diagnosis Podcast. In this conversation, Kathy Wisniewski and Kristin Nesensohn discuss the upcoming Histio Patient and Family Summit, highlighting its significance in fostering education, connection, and support within the histiocytosis community. Join them as they explore the inspiration behind the summit, the importance of partnerships between patients and clinicians, and the various activities planned for the event, including interactive learning opportunities and a youth lounge.
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:
Register for the Patient and Family Summit! Early bird registration ends June 30, 2025!
Questions about the summit? Reach out to outreach@histio.org
Follow the Histiocytosis Association on social media:
Facebook: https://www.facebook.com/histio
Twitter: @histiocytosis
Instagram: histiocytosis_association
Music: “Heroes” by Noah Smith
Welcome to Episode 079 of the Beyond the Diagnosis Podcast. In this episode, we’re sharing a previously recorded webinar that was presented to the histio community just a few months ago. It’s an important and insightful conversation about the often-overlooked connection between endocrine conditions and histiocytosis.
Drs. Polyzois Makris and Gaurav Goyal join us to explore their research and the critical role endocrinologists play in recognizing symptoms early, guiding diagnosis, and supporting long-term monitoring. Offering helpful takeaways for healthcare providers and patients and families alike, they walk us through the workup process, highlight how our understanding of these rare diseases continues to grow, and present valuable knowledge and real-world insight into improving care for those affected by histiocytic disorders.
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.
Learn all about the Histiocyte Society here: https://histiocytesociety.org
To make a gift to help the Association keep doing the important work that we’re doing, go to www.histio.org and click on the big green “Donate” button in the upper right.
Follow the Histiocytosis Association on social media:
Facebook: https://www.facebook.com/histio
Twitter: @histiocytosis
Instagram: histiocytosis_association
Music: “Heroes” by Noah Smith
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:
Follow the Histiocytosis Association on social media:
Music: “Heroes” by Noah Smith
Welcome to Episode 077 of the Beyond the Diagnosis Podcast. Curious about the latest research on treating Erdheim-Chester disease (ECD)? In this episode, we’re chatting with Drs. Goyal, Abeykoon, and Acosta-Medina about their study on MEK inhibitors and what it means for patients. We’ll explore how our understanding of histiocytic disorders has evolved, the challenges doctors face in choosing the right treatment, and why real-world data is so important. Plus, we’ll dive into how genetic mutations can affect patient responses and why ongoing research and collaboration are key to improving outcomes. Tune in for an inside look at the latest in ECD research!
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.
Resources mentioned in the podcast:
Survivorship Study: https://histio.org/uab-survivorship-study-and-its-impact-so-far/
Email histio@uabmc.edu
To make a gift to help the Association keep doing the important work that we’re doing, go to www.histio.org and click on the big green “Donate” button in the upper right.
Follow the Histiocytosis Association on social media:
Facebook: https://www.facebook.com/histio
Twitter: @histiocytosis
Instagram: histiocytosis_association
Music: “Heroes” by Noah Smith
Welcome to Episode 076 of the Beyond the Diagnosis Podcast. In this episode we’re bringing you the third in our “Meet the Team,” series where we introduce you to the dedicated individuals working behind the scenes of the Histiocytosis Association. In this episode we’ll meet Erica, our Database Coordinator. Join us as Erica shares her journey to the Association, the challenges and intricacies of her role, and her message to the histio community.
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:
Follow the Histiocytosis Association on social media:
Facebook: https://www.facebook.com/histio
Twitter: @histiocytosis
Instagram: histiocytosis_association
Music: “Heroes” by Noah Smith
Welcome to Episode 075 of the Beyond the Diagnosis Podcast. We're diving into part 3 of the 2024 HopeCast replay, originally broadcast live on Giving Tuesday in December 2024. This episode is focused on the third and final pillar of Research and the progress we’re making towards finding better treatments and a cure! 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.
Resources mentioned in the podcast:
Learn all about the Histiocyte Society here: https://histiocytesociety.org
To make a gift to help the Association keep doing the important work that we’re doing, go to www.histio.org and click on the big green “Donate” button in the upper right.
Follow the Histiocytosis Association on social media:
Facebook: https://www.facebook.com/histio
Twitter: @histiocytosis
Instagram: histiocytosis_association
Music: “Heroes” by Noah Smith
Welcome to Episode 074 of the Beyond the Diagnosis Podcast. Come along with us in this episode as we share part 2 of a replay of the 2024 HopeCast, originally broadcast live on Giving Tuesday in December 2024. This episode is focused on the second pillar of Support and how it provides hope for patients and families.
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.
Resources mentioned in the podcast:
Learn all about the Histiocyte Society here: https://histiocytesociety.org
To make a gift to help the Association keep doing the important work that we’re doing, go to www.histio.org and click on the big green “Donate” button in the upper right.
Follow the Histiocytosis Association on social media:
Facebook: https://www.facebook.com/histio
Twitter: @histiocytosis
Instagram: histiocytosis_association
Music: “Heroes” by Noah Smith
Sound effects from Pixabay
Welcome to Episode 073 of the Beyond the Diagnosis Podcast. Come along with us in this episode as we share a replay of the HopeCast, originally broadcast on Giving Tuesday 2024. Filled with stories, accomplishments and a look ahead, this is an episode that is sure to provide much 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 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.
Resources mentioned in the podcast:
Learn more about the Histio Ambassador Program here: https://histio.org/histio-ambassadors/
For more information about our Peer Chats, check out our page here: https://histio.org/resource-overview/peer-chats/
Get more information about the Histio Scholarship Program here: https://histio.org/resource-overview/scholarship-program/
Podcast episodes 27 and 48 that talk about our research grant program:
Learn all about the Histiocyte Society here: https://histiocytesociety.org
To make a year end gift to help the Association keep doing the important work that we’re doing, go to www.histio.org and click on the big green “Donate” button in the upper right.
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
Sound effects from Pixabay
Welcome to Episode 072 of the Beyond the Diagnosis Podcast. In this episode we’re learning about the most recent Histiocyte Society Annual Meeting right from the horse’s mouth! Join us as Histiocyte Society President, Dr. Kim Nichols, shares all of the highlights from this most unique and exciting meeting!
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:
Follow the Histiocytosis Association on social media:
Music: “Heroes” by Noah Smith
Welcome to Episode 071 of the Beyond the Diagnosis Podcast. In this episode we’re bringing you the second in our “Meet the Team,” series where we introduce you to the dedicated individuals working behind the scenes of the Histiocytosis Association. Ion this episode we’ll meet Danielle, our Chief Financial Officer. Join us as Danielle shares her journey to the Association, the challenges and rewards of her role, and her message to the histio community.
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:
· 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
Welcome to episode 070 of the Beyond the Diagnosis podcast. In this episode, Deanna Fournier guest hosts interviews with Sandra Lamb and Jane Johnson, two experienced disability representatives, about navigating the Social Security Administration (SSA) for individuals with histiocytic disorders. Part 2 of a 2-part series, this episode focuses specifically on children. They explain the eligibility criteria for applying for Social Security benefits, the role of disability representatives, and the importance of maintaining records. They also address the process of appealing denials and provide contact information for those seeking assistance.
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:
· National Association of Disability Representatives
· Should I Quit My Job Before Applying for Disability?
·
Contact Jane at Foothills Disability – 1-828-394-9657 or jane@foothillsdisability.com
Follow the Histiocytosis Association on social media:
Music: “Heroes” by Noah Smith
Welcome to episode 069 of the Beyond the Diagnosis podcast. In this episode, Deanna Fournier guest hosts interviews with Sandra Lamb and Jane Johnson, two experienced disability representatives, about navigating the Social Security Administration (SSA) for individuals with histiocytic disorders, specifically adults. They discuss the recent expansion of the compassionate allowances list, which allows for expedited disability requests and provides access to benefits such as Medicaid and Medicare, eligibility criteria for applying for Social Security benefits, and the role of disability representatives. They also address the process of appealing denials and provide contact information for those seeking assistance. With a series of questions posed by the histio community, we know this is an episode you will find extremely valuable!
Resources mentioned in the podcast:
· Applying for Social Security Disability
· Should I Quit My Job Before Applying for Disability?
Follow the Histiocytosis Association on social media:
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
Music: “Heroes” by Noah Smith
Welcome to Episode 068 of the Beyond the Diagnosis Podcast. In this episode we’re excited to kick off our new series, “Meet the Team,” where we introduce you to the dedicated individuals working behind the scenes. Our first guest is Peter Yanefski, our Strategic Communications Associate, who plays a vital role in shaping the voice and outreach of our organization. Join us as Peter shares his journey to the Association, the challenges and rewards of his role, and his vision for the future of our communications strategy.
Plus, get a glimpse into the person behind the emails, newsletters, and social media posts you see every day!
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:
Follow the Histiocytosis Association on social media:
Welcome to Episode 067 of the Beyond the Diagnosis Podcast. In this episode we’re diving into the innovative Young Investigator initiatives within the Histiocyte Society, spotlighting the newly formed Young Investigator and Social Media committees. We explore their goals and strategies, highlighting how these efforts are cultivating the next generation of leaders and researchers in the world of histiocytosis. Join us as we discuss the exciting developments and the impact these committees are making on the future of the Society.
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:
Welcome to Episode 066 of the Beyond the Diagnosis Podcast. In this episode we’re diving into the complex emotions surrounding grief patients and families dealing with histiocytosis. We’ll talk about the different types of grief, the stages of healing, and the importance of dedicated grief support groups. Join us for an enlightening and inspiring conversation about finding strength and community amidst the challenges of 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:
· Information on the Histiocytosis Association’s various Peer Support groups: https://histio.org/resource-overview/peer-chats/
· Follow the Histiocytosis Association on social media:
Music: “Heroes” by Noah Smith
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:
· Follow the Histiocytosis Association on social media:
