Education & Connection

Histio Educational Opportunities

One of the primary goals of the Histiocytosis Association is to provide the Histio Community with information that can help you better understand histiocytic disorders, their diagnosis, treaments and possible long-term effects.

Beyond the Diagnosis Podcast

The Beyond the Diagnosis podcast was created to give patients, families, caregivers and other members of the Histio Community the opportunity to have access to another educational resource to help you on your histio journey. This podcast provides an additional platform by which you can consume information while on the go or if you're unable to remain in front of a computer for an extended period of time.

Our vision for the Beyond the Diagnosis podcast is to extend our reach farther and wider and be able to get important, timely, and relevant health and lifestyle information to the Histio Community.  We strive to explore topics that are “beyond the diagnosis,” or on the outer edge of what one would expect to hear from a rare disease podcast. We want to answer the lifestyle and overall health questions that you have - and the ones you didn’t know you had.

Tune-in with our Beyond the Diagnosis host, Kathy, and special guests! Listen below or on one of the following popular podcast streaming services: Apple, Spotify, Google, Breaker, Pocket, and RadioPublic.

About this Episode: In Episode 010 of the Beyond the Diagnosis, Kathy sits down with Deanna Fournier to take a look back on what the Association has accomplished this year and a look ahead at what is planned for 2022.

About this Episode: In Episode 9 of the Beyond the Diagnosis Podcast, Kathy talks with Becka Florczyk of Becka Flo Yoga about Emotional Wellness Month and some things we can do to improve and protect our own emotional and physical wellness. Whether you enjoy a current yoga practice or you’ve never stepped on the mat, this episode is sure to convince you of the emotional and physical advantages yoga has waiting for you.

About this Episode: In Episode 8, Kathy connects with Dr. Melissa Hines from St. Jude Children’s Research Hospital to discuss how clinical trials work and to understand more about the process and reasoning behind Dr. Hines’ current clinical trial project that was funded by the Association in 2019.

About this Episode: In Episode 7, Kathy sits down with 4 very special guests for a panel discussion about the importance of raising awareness, what different organizations are doing during Histiocytosis Awareness Month, and how you can get involved.

About this Episode: In Episode 6, Kathy sits down with histio patient, Carol Fragoso, as she shares her inspiring story of accepting and overcoming the obstacles that histiocytosis has caused in her life. It is a story of hope, encouragement, and paying it forward.

About this Episode: In Episode 5, Kathy puts her knowledge as a health coach to use as she talks about the effects that stress can have on the body and gives practical tips on how to mitigate those effects so you can live your life in the most happy, healthy and fulfilling way. Fill your toolbox with tools that you can employ at any time to help bring your mind and your body just a little bit closer to a state of balance while dealing with something as difficult as histiocytosis.

About this Episode: Episode 4 is an interview with Jamie Sullivan and Shannon von Felden from the EveryLife Foundation about the STAT Act, the upcoming Rare Disease Week and the impact that both of these initiatives have had and will have on the rare disease community. We also welcome Deanna Fournier, Executive Director of the Histiocytosis Association as she shares about the Association’s involvement in several of EveryLife Foundation’s working groups.

About this Episode: Episode 3 is an interview with the President of the Histiocyte Society to learn about the work that they're doing and the vision for the future.

About this Episode: Episode 2 is a look into the Histiocytosis Association, staff roles, and future vision for the organization with Executive Director, Deanna Fournier.

About this Episode: Welcome to the premiere episode of the Beyond the Diagnosis podcast where we strive to bring you useful and timely information to inspire and encourage you on your journey with histiocytosis. In this episode, learn a little bit about your host, how the podcast came to be and what you can expect from future episodes.


Previous Webinars available to watch on-demand. Scroll through to view all of the available webinars on-demand. To hear about upcoming live webinars and availability of new on-demand options, sign up for email alerts, or follow us on Facebook.

Educational Video Series

The Histiocytosis Association is pleased to present a collection of educational videos highlighting common questions about histiocytic disorders, their symptoms and treatment. The videos feature 13 physicians and scientists from around the world who are leaders in the field of histiocytosis.

Videos are available for online viewing below.  Learn more about the presenters by clicking on each name below.

Play Video

Overview of LCH in Children

Dr. Egeler discusses an overview of Langerhans cell histiocytosis (LCH), its symptoms, diagnosis and treatment, as well as a description of the BRAF mutation and the importance of the relationship between the Histiocytosis Association and the Histiocyte Society.

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LCH Degrees of Risk

Dr. Stine discusses the difference between the degrees of risk with LCH (low, high, and multi-system involvement). Dr. Stine also outlines what determines the length of treatment for LCH.

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CNS Involvement

Dr. McClain outlines what it means to have Central Nervous System involvement (CNS) as well as the symptoms and treatment. Dr. McClain also covers the relationship between LCH and CNS, long-term effects and what patients can expect with this diagnosis.

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Late Effects of LCH

Dr. Baker discusses the late effects/long term side effects of LCH and its treatment as well as any learning or behavioral issues that may arise.

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Overview of LCH (en Español)

¿Qué es la Histiocitosis de Célula de Langerhans (HCL) (en niños)?
¿Cuáles son los síntomas de la HCL?
¿Existe una curacón para la HCL?

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Overview of LCH in Adults

Dr. Girschikofsky discusses an overview of LCH in Adults, current treatments, and what patients can expect moving forward after diagnosis.

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Overview of Pulmonary LCH

Dr. Vassallo gives an overview of Pulmonary Langerhans cell histiocytosis (PLCH) as well as the symptoms, diagnosis, treatment and long-term effects.

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Overview of HLH

Dr. Jordan gives an overview of hemophagocytic lymphohistiocytosis (HLH), its symptoms, diagnosis and treatment.

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Overview of Rosai-Dorfman Disease

Dr. Abla gives an overview of Rosai-Dorfman disease, its symptoms, diagnosis and treatment.

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Overview of Juvenile Xanthogranuloma

Dr. Abla gives an overview of Juvenile Xanthogranuloma, its symptoms, diagnosis and treatment.

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Overview of Erdheim-Chester Disease (ECD)

Dr. Arceci gives an overview of ECD, its symptoms, diagnosis and treatment.

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Overview of Diabetes Insipidus (DI)

Dr. Whitlock gives an overview of Diabetes Insipidus, its diagnosis and treatment.

Play Video

Importance of Clinical Trials

Dr. Gross reviews the importance of clinical trials for patients as well as for the future of histiocytic research, the challenges associated with trials and how you or your physician can learn more about ongoing clinical trials.

Play Video

Scientific Research Review Process

Dr. Allen discusses the role of the Histiocyte Society Scientific Committee in the Histiocytosis Association's competitive grant application process. Dr. Allen also discusses the grading criteria and the importance of this type of funding process.

Regional Meetings

The rarity of histiocytic disorders makes it difficult for patients and families to have the opportunity to meet and share with others who understand what they are going through. It is common for patients and families to feel alone and hopeless as they face the devastating effects of histiocytic disorders. Regional Meetings offer the opportunity to learn the latest information about histiocytic disorders through a presentation from experts and to connect with other patients and families in your region. The informal atmosphere invites the sharing of personal experiences and the offering of emotional comfort and moral support.

Our in-person regional meetings are temporarily postponed until further notice to protect the safety of all involved. We look forward to gathering together in-person again in the future! In the meantime, we have periodic virtual webinar opportunities to attend live and view on-demand in our Webinars section above.

Benefits of Participating:

  • Feel less lonely, isolated or judged
  • Gain a sense of empowerment
  • Improve your coping skills
  • Talk openly and honestly about feelings
  • Reduce distress, depression or anxiety
  • Develop a clearer understanding of what to expect with your situation
  • Get practical information about treatment options
  • Learn about better patient care
  • Improve caregiver wellness

Histio News Reader

Some of the articles presented on this website are accessed through RSS feeds from third-party sources that are not necessarily part of the Histiocytosis Association. While we try to select appropriate feeds to prevent objectionable content from being displayed, the presence of any article does not indicate endorsement or recommendation by the Histiocytosis Association.

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