Medical Professional Resources

The ECDGA is pleased to share that the National Comprehensive Cancer Network® (NCCN®)—an alliance of leading cancer centers—has published a new NCCN Guidelines® for Histiocytosis.  These clinical practice guidelines provide the latest evidence and expert consensus for diagnosing and treating the three most common forms of histiocytosis in adults: Langerhans cell histiocytosis (LCH), Erdheim-Chester Disease (ECD,) and Rosai-Dorfman Disease (RDD).  The NCCN Guidelines can help patients, families, and physicians access the latest information about symptoms, diagnosis, treatment, and more. The guidelines can also serve as a useful tool when seeking approvals for coverage of drugs and therapies. The guidelines are updated at least once a year and can be accessed at any time. Access your copy below or on PubMed. 

NCCN Guidelines

Survivorship Issues in Adult Patients With Histiocytic Neoplasms 

Expert guidelines for ECD care and treatment, written in 2020, can be found here: Erdheim-Chester disease: consensus recommendations for evaluation, diagnosis, and treatment in the molecular era.

Expert presentation slides and videos on ECD cases and ongoing research are listed under Medical Symposium or our YouTube channel.

Current ECD studies and trials are listed online to assist physicians and patients.

Medical providers that need assistance gaining approval for an ECD patient’s care and medication can find more information here: Filing Payer Appeals.

Caring for Your Patient with a Rare Disease is provided by the NIH to help medical personnel when presented with a rare disease case, including tips for ICD coding.

ECD medical experts in our community have helped compile two types of brochures for general education and awareness purposes.  The patient brochure is available to help new members of the community understand the basics of ECD.  The medical brochure is available to share with your care team or any medical professional.  Request a free copy by filling out this form.

Request a Brochure


Find articles about Erdheim-Chester disease online using PubMed.  PubMed is a free search engine used to access references and abstracts on life sciences and biomedical topics. The United States National Library of Medicine at the National Institutes of Health maintains the database of information retrieval. As of October 2021, there are 1,034 articles referencing “Erdheim Chester” on Pubmed.


For ECD researchers:

We are the only private funder dedicated to ECD research.

Learn more about our research funding opportunities.

Learn about scientific meetings the ECDGA will be hosting and attending.

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Last updated: June 11, 2024

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