Beyond the Diagnosis

Welcome to Episode 092 of the Beyond the Diagnosis podcast! In this episode we’re exploring the often-overlooked mental health impact of rare disease across every stage of the journey, from the uncertainty before diagnosis to treatment, remission, and beyond. Licensed social worker Doris Dahdouh joins us to discuss the emotional realities patients, caregivers, and siblings face, including anxiety,...

Welcome to Episode 091 of the Beyond the Diagnosis Podcast. In this episode of Beyond the Diagnosis, Kathy sits down with hematologist Dr. Richard Godby from Mayo Clinic to explore the rapidly evolving role of artificial intelligence in rare disease and healthcare. Together, they unpack how AI is already helping patients and physicians navigate complex medical information, shorten diagnostic journ...

Welcome to Episode 090 of the Beyond the Diagnosis Podcast. In this heartfelt episode, Kristin Aaron shares the inspiring story of her son Jenson, whose joyful spirit sparked the Monkey Grins initiative, bringing smiles to children battling histiocytosis and their siblings. Despite the challenges of Langerhans cell histiocytosis (LCH), Jenson's legacy of love and resilience continues to uplift...

Welcome to Episode 089 of the Beyond the Diagnosis Podcast. In this episode we sit down with 2024 Histio Student Scholarship recipient Brinda Shukla to hear her powerful journey from a Rosai-Dorfman Disease diagnosis at age 13 to pursuing a future in medicine. Brinda shares her personal story, what it was like to apply for and receive the scholarship, and how the experience has supported her acade...

Welcome to Episode 088 of the Beyond the Diagnosis Podcast. During Rare Disease Week 2026, we’re shining a spotlight on something that moves our community forward in powerful ways: advocacy.  On this episode we sit down with Nate Saelinger — a Histiocytosis Youth Ambassador, high school sophomore, and passionate advocate — who went to Capitol Hill to participate in Rare Disease Week with the Every...

Welcome to Episode 087 of the Beyond the Diagnosis Podcast. In this episode Kathy welcomes Dr. Karen Rech from the Mayo Clinic to discuss her groundbreaking research on Erdheim-Chester Disease (ECD). The conversation delves into the challenges of diagnosing ECD, highlighting the significance of cyclin D1 overexpression as a potential marker. Dr. Rech explains how this discovery aids in distinguish...

Welcome to Episode 086 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 2025.  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...

Welcome to Episode 085 of the Beyond the Diagnosis Podcast. It’s that time of year where all thoughts shift to gratitude and we wanted to take a moment to express our thankfulness to our histio community for all you do throughout the year!  Join Kathy for this heartfelt message of thanksgiving and hope.  Let us know what you think! Leave us a review, drop us a comment or share an idea for a future...

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 u...

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...

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...

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 expe...

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 a...

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...

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 pu...

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...

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 he...

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 a...

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 id...

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...

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 futu...

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 reward...

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...

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 all...

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 journ...