Erdheim-Chester disease (ECD) a non-Langerhans form of histiocytosis is a multisystemic disease characterized by various manifestations such as skeletal involvement with bone pain exophthalmos diabetes insipidus renal impairment and central nervous system (CNS) and/or cardiovascular involvement.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview. Reference: Access aggregated data from Orphanet at Orphadata. Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version April 2026
Newly diagnosed with
Erdheim-Chester disease?
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Advocacy Organizations
Autoimmune Registry Inc.
Autoimmune Registry, Inc., ARI, is a 501(c)(3) non-profit umbrella organization that provides a hub for research, statistics, and patient data on all autoimmune diseases. Since 2016 we have operated a database for patients who suffer from any autoimmune disease. Our mission is to reduce the time of diagnosis, support research, compute prevalence statistics, and establish autoimmune disease as a major class of disease so that it receives the awareness of the public, the attention of healthcare providers, and the appropriate funding needed to improve upon existing treatment protocols and disease management strategies.
Autoinflammatory Alliance
https://autoinflammatory.org
ECD Global Alliance
The ECD Global Alliance is dedicated to the awareness, support, education, and research related to Erdheim-Chester Disease. The organization works with the global community to accomplish the following: (1) Raise Awareness of ECD; (2) Provide support to those affected by the disease; (3) Advocate for and support research programs; (4) Share educational material and support collaborations.
The Dynamite Foundation Inc
The Dynamite Foundation is on a heartfelt mission: to bring love, hope, and joy to individuals impacted by Histiocytosis around the world We do this through Dynamite the Histio Warrior Dragon™; a handcrafted crochet dragon sent to Histio Warriors in the midst of their battles, and to Angel Families remembering their loved ones through Angel Dynamite.
Ukrainian Association of Pediatric Immunology
Development of pediatric and clinical immunology in Ukraine. Raising awareness of inborn errors of immunity in Ukraine and rare immune diseases; Advocacy campaigns supporting patients with rare immune diseases and their treatment plans; Scientific research; Sharing knowledge about immunoprophylaxis; Advocacy campaigns supporting immunoprophylaxis.
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Clinical Trials
For a list of clinical trials in this disease area, please click here.