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Erdheim Chester disease

Abstract

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NORD is very grateful to Robert D. Shamburek, MD, Lipid Service, Cardiovascular and Pulmonary Branch, National Heart, Lung, and Blood Institute, NIH, for assistance in the preparation of this report.

Synonyms of Erdheim Chester disease

ECD
lipoid granulomatosis

Disorder Subdivisions

No subdivisions found.

General Discussion

Erdheim-Chester disease (ECD) is a rare multisystem disorder of adulthood. It is characterized by excessive production and accumulation of histiocytes within multiple tissues and organs. Histiocytes are large phagocytic cells (macrophages) that normally play a role in responding to infection and injury. (A phagocytic cell is any "scavenger cell" that engulfs and destroys invading microorganisms or cellular debris.) In those with ECD, sites of involvement may include the long bones, skin, tissues behind the eyeballs, lungs, brain, pituitary gland, and/or additional tissues and organs. Associated symptoms and findings and disease course depend on the specific location and extent of such involvement. The specific underlying cause of ECD is unknown.

Organizations related to Erdheim Chester disease

NORD offers an online community for this rare disease. RareConnect was created by EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources. You can view these international, rare disease communities at www.rareconnect.org.

ECD Global Alliance
- P.O. Box 775
- DeRidder, LA 70634
- Phone #: 337-515-6987
- 800 #: N/A
- e-mail: support@erdheim-chester.org
- Home page: http://www.erdheim-chester.org
Genetic and Rare Diseases (GARD) Information Center
- PO Box 8126
- Gaithersburg, MD 20898-8126
- Phone #: 301-251-4925
- 800 #: 888-205-2311
- e-mail: N/A
- Home page: http://rarediseases.info.nih.gov/GARD/
Histiocytosis Association, Inc.
- 332 North Broadway
- Pitman, NJ 08071
- Phone #: 856-589-6606
- 800 #: 800-548-2758
- e-mail: association@histio.org
- Home page: http://www.histio.org
MUMS National Parent-to-Parent Network
- 150 Custer Court
- Green Bay, WI 54301-1243 USA
- Phone #: N/A
- 800 #: N/A
- e-mail: mums@netnet.net
- Home page: http://www.netnet.net/mums/
NIH/National Heart, Lung and Blood Institute
- P.O. Box 30105
- Bethesda, MD 20892-0105
- Phone #: 301-592-8573
- 800 #: --
- e-mail: nhlbiinfo@rover.nhlbi.nih.gov
- Home page: http://www.nhlbi.nih.gov/
NIH/National Institute of Arthritis and Musculoskeletal and Skin Diseases
- Information Clearinghouse
- One AMS Circle
- Bethesda, MD 20892-3675 USA
- Phone #: 301-495-4484
- 800 #: 877-226-4267
- e-mail: NIAMSinfo@mail.nih.gov
- Home page: http://www.niams.nih.gov/
NIH/National Institute of Neurological Disorders and Stroke
- P.O. Box 5801
- Bethesda, MD 20824
- Phone #: 301-496-5751
- 800 #: 800-352-9424
- e-mail: N/A
- Home page: http://www.ninds.nih.gov/

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