Erdheim-Chester Disease

ICD-10: C96.1MeSH: D031249ORPHA: 35687

Overview

Erdheim-Chester disease is an extremely rare non-Langerhans cell histiocytosis characterized by excessive production and accumulation of histiocytes in multiple organs. Patients present with bone pain, diabetes insipidus, exophthalmos, and cardiovascular or pulmonary involvement. Approximately 60% of cases harbor BRAF V600E mutations. Global prevalence is estimated at fewer than 1 in 1,000,000 individuals.

Available Treatments (0)

No treatments linked yet

Clinical trials or compassionate use may be available — consult a specialist.

Clinical Presentation

Signs and symptoms associated with Erdheim-Chester Disease, sourced from HPO and Orphanet clinical annotations.

Hypogonadotropic hypogonadismProptosisDiabetes insipidusAbnormal metaphysis morphologyHyperhidrosisXanthelasmaWeight lossFeverPolydipsiaBone painOsteomyelitisOsteolysisAbnormal epiphysis morphologyIncreased bone mineral densityFatigueDysuriaHydronephrosisJoint swellingAbnormal aortic valve morphologyAbdominal painRetroperitoneal fibrosisRenal insufficiencyVisual impairmentPtosisNystagmusSkin rashAtaxiaDysarthriaAbnormal cerebellum morphologyHyperreflexiaCongestive heart failureAbnormal pericardium morphologyAnemiaNausea and vomitingDyspneaPleural effusionPulmonary fibrosisAbnormal pulmonary interstitial morphologyAvascular necrosisAbnormality of immune system physiologyCough

Classification & Codes

ICD-10 Code

C96.1

MeSH Code

D031249

Orphanet Code

ORPHA:35687
Erdheim-Chester Disease
ICD-10C96.1
MeSHD031249
OrphanetORPHA:35687
Treatments0 drug(s)
Symptoms on record41 signs
Statuspublished
Factual Authority
Last Updated3/21/2026
Clinical DataHPO · Orphanet
Drug DataFDA · EMA · CDSCO