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!
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.
Overview of LCH in Children
Dr. Maarten Egeler, MD, PhD
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.
LCH Degrees of Risk
Dr. Maarten Egeler, MD, PhD
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.
Dr. Kenneth McClain, MD, PhD
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.
Late Effects of LCH
Dr. K. Scott Baker, MD
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.
Overview of LCH (en Español)
Dr. Carlos Rodriguez-Galindo, MD
¿Qué es la Histiocitosis de Célula de Langerhans (HCL) (en niños)?
¿Cuáles son los síntomas de la HCL?
¿Existe una curacón para la HCL?
Overview of LCH in Adults
Dr. Michael Girschikofsky, MD
Dr. Girschikofsky discusses an overview of LCH in Adults, current treatments, and what patients can expect moving forward after diagnosis.
Overview of Pulmonary LCH
Dr. Robert Vassallo, MD
Dr. Vassallo gives an overview of Pulmonary Langerhans cell histiocytosis (PLCH) as well as the symptoms, diagnosis, treatment and long-term effects.
Overview of HLH
Dr. Michael Jordan, MD
Dr. Jordan gives an overview of hemophagocytic lymphohistiocytosis (HLH), its symptoms, diagnosis and treatment.
Overview of Rosai-Dorfman Disease
Dr. Oussama Abla, MD
Dr. Abla gives an overview of Rosai-Dorfman disease, its symptoms, diagnosis and treatment.
Overview of Juvenile Xanthogranuloma
Dr. Oussama Abla, MD
Dr. Abla gives an overview of Juvenile Xanthogranuloma, its symptoms, diagnosis and treatment.
Overview of Erdheim-Chester Disease (ECD)
Dr. Robert Arceci, MD, PhD
Dr. Arceci gives an overview of ECD, its symptoms, diagnosis and treatment.
Overview of Diabetes Insipidus (DI)
Dr. James Whitlock, MD
Dr. Whitlock gives an overview of Diabetes Insipidus, its diagnosis and treatment.
Importance of Clinical Trials
Dr. Thomas Gross, MD, PhD
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.
Scientific Research Review Process
Dr. Carl Allen, MD, PhD
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.
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.
If you know of a histio-related article that isn't shown here, please send the article to firstname.lastname@example.org.
- Pediatric Growth Hormone Deficiency: Causes and Risk Factors - Verywell Health April 12, 2021
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- Merck's KEYTRUDA® (pembrolizumab) Demonstrated Superior Disease-Free Survival (DFS) Compared With Placebo as Adjuvant Therapy in Patients With Renal Cell Carcinoma (RCC) Following Surgery - BioSpace April 8, 2021
- Bristol Myers Squibb Announces Opdivo (nivolumab) plus Chemotherapy and Opdivo plus Yervoy (ipilimumab) Demonstrate Superior Survival Benefit - BioSpace April 8, 2021
- [Full text] Case report of Adenocarcinoma in retrorectal cyst | IMCRJ - Dove Medical Press April 7, 2021
- Pediatric Growth Hormone Deficiency: Overview and More - Verywell Health April 5, 2021
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- Is your dog at risk of cancer? - Cosmos April 2, 2021
- Mutations across the genome add up to blood cancer risk in three popular dog breeds - EurekAlert April 1, 2021
- Blood Tests for Autoimmune Diseases - Verywell Health April 12, 2021
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- Evaluation & Management of COVID-19 in Pregnancy - Contemporary Obgyn April 9, 2021
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- [Full text] Diagnosing MonoMAC syndrome in GATA2 germline mutated MDS | IDR - Dove Medical Press April 5, 2021
- The role of antirheumatics in patients with COVID-19 - The Lancet March 30, 2021
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- [Full text] Review of Chimeric Antigen Receptor T-cell Therapy | OTT - Dove Medical Press March 26, 2021
- KEYTRUDA® Plus LENVIMA® Significantly Improved Progression-Free Survival and Overall Survival Versus Chemotherapy in Patients With Advanced Endometrial Cancer Following Prior Platinum-Based Chemotherapy in Phase 3 Study - BioSpace March 19, 2021
- Inflammatory profiles across the spectrum of disease reveal a distinct role for GM-CSF in severe COVID-19 - Science March 10, 2021
- Global Asthma Care Equipment Market Size, Share, Value, and Competitive Landscape 2020 – The Bisouv Network - The Bisouv Network April 12, 2021
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- Global Erdheim Chester Disease Treatment Market 2021 In-depth Industry Analysis, Growth By 2025 : Bausch Health, Cadila Healthcare, Aphena Pharma Solutions, Roche, SANIS, Novartis, Cardinal Health, Pfizer - The Bisouv Network April 9, 2021
- Erdheim-Chester Disease Market to rise in Near Future 2027, Key Players – F. Hoffmann-La Roche, Fresenius SE & Co. KGaA, Hikma Pharmaceuticals PLC, Teva Pharmaceuticals Industries Ltd – KSU | The Sentinel Newspaper - KSU | The Sentinel Newspaper April 6, 2021
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- Lilly Presents New Data on Retevmo® (selpercatinib) in Advanced RET Fusion-Positive Gastrointestinal and Other Cancers at 2021 American Association for Cancer Research (AACR) Annual Meeting - PRNewswire April 10, 2021
- Nodular Lesion in a Newborn with Spontaneous Regression - AAP News March 1, 2021
- Red papulonodule with central crusting on a neonate's cheek - Contemporary Pediatrics January 14, 2021
- Assessment of deep neural networks for the diagnosis of benign and malignant skin neoplasms in comparison with dermatologists: A retrospective validation study - PLoS Blogs November 25, 2020
- Rapidly enlarging scalp nodules in a 20-month-old child - CMAJ September 14, 2020
- Juvenile Xanthogranuloma: Case Report and Literature Review | IMCRJ - Dove Medical Press February 25, 2020
- Largest Study of Its Kind Reveals New Targetable Genetic Causes of the Rare Blood Disorder Histiocytosis - On Cancer - Memorial Sloan Kettering December 4, 2019
- Interleukin-36γ–producing macrophages drive IL-17–mediated fibrosis - Science October 11, 2019
- Can treating warts do more harm than good? - Dermatology Times July 7, 2019
- Picture of Erythema Ab Igne - WebMD May 26, 2019
- NCCN guidelines for histiocytosis clarify best practices for recently-defined cancers - The Cancer Letter March 5, 2021
- Nodular Lesion in a Newborn with Spontaneous Regression - AAP News March 1, 2021
- New NCCN guidelines for histiocytosis clarify best practices for recently-defined cancers - EurekAlert March 1, 2021
- Apollo Hospitals Successfully Performs Four Liver Transplant Surgeries Following COVID-19 Recovery - Business Wire India February 26, 2021
- State lawmakers gearing up for marathon session taking up proposal repealing religious exemptions for childhood vaccinations - WTNH.com February 15, 2021
- Bridgeport man: Flu vaccine caused rare disease; will oppose state bill - News 12 - News 12 Connecticut October 4, 2020
- Young Girl Diagnosed and Treated With the Rare Case of the Rosai Dorfman Disease - Business Wire India August 20, 2020
- You Don't Look Sick: What it's like living with an invisible illness - Metro.co.uk February 9, 2020
- Vikram Hospital Bengaluru performs successful delivery on patient suffering from rare case of Intracranial Rosai Dorfman Disease - Express Healthcare January 29, 2020
- 10th Annual Health Survey by Sportz Village reveals one out of two children do not have healthy BMI - Express Healthcare January 29, 2020
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- Diabetes and Dehydration: Symptoms and Causes - Healthline March 19, 2021
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- The mRNA IP and Competitive Landscape Through One Year of the COVID-19 Pandemic–Part I - JD Supra April 13, 2021
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