Langerhans Cell Histiocytosis

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Langerhans Cell Histiocytosis

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Langerhans Cell Histiocytosis is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

Synonyms

  • Histiocytosis-X
  • Eosinophilic Granuloma
  • Hand-Schuller Christian Syndrome
  • Letterer-Siwe Disease

Disorder Subdivisions

  • None

General Discussion

Langerhans cell histiocytosis (LCH) is a non-malignant proliferation of Langerhans cells (LC). Children and adults may have LCH in skin (macular, papular, ulcerative, or seborrheic rashes), bones (lytic lesions), lymph nodes, brain (pituitary, cerebrum and cerebellum) lung, liver, spleen, and bone marrow. Systemic symptoms may include fever, weight loss, draining ears, diabetes insipidus or other endocrinopathies.

Resources

Histiocytosis Association of America
332 North Broadway
Pitman, NJ 08071
Tel: (856)589-6606
Fax: (856)589-6614
Tel: (800)548-2758
Email: association@histio.org
Internet: http://www.histio.org

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)997-4488
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: http://www.marchofdimes.com

Diabetes Insipidus Foundation, Inc.
c/o Mike Gandrud
1232 24th Street
Ames, IA 50010
United States
Tel: (410)480-0880
Email: info@diabetesinsipidus.org
Internet: http://www.diabetesinsipidus.org

American Lung Association
1301 Pennsylvania Ave NW
Suite 800
Washington, DC 20004
USA
Tel: (202)785-3355
Fax: (202)452-1805
Tel: (800)586-4872
Email: info@lungusa.org
Internet: http://www.lungusa.org

NIH/National Heart, Lung and Blood Institute
P.O. Box 30105
Bethesda, MD 20892-0105
Tel: (301)592-8573
Fax: (301)251-1223
Email: nhlbiinfo@rover.nhlbi.nih.gov
Internet: http://www.nhlbi.nih.gov/

Histiocytosis UK
25 Fox Close
Derby, Intl DE24 3JE
United Kingdom
Tel: 44 07527 166185
Fax: 44 1908 770373
Email: info@histiouk.net
Internet: http://www.histiocytosisuk.net/index.php

MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: (920)336-5333
Fax: (920)339-0995
Tel: (877)336-5333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/

Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311
TDD: (888)205-3223
Email: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
Internet: http://rarediseases.info.nih.gov/GARD

Histiocytosis Association of Canada
Box 29095
Okanagan Mission RPO
Kelowan, BC, V1W 4A7
Canada
Tel: 250-764-6104
Fax: 250-764-6104
Email: histio.canada@shaw.ca
Internet: http://www.histiocytosis.ca/

Histiocytosis Research Trust
PO Box 435
Leeds, LS17 1GE
UK
Tel: 07850 740241
Email: shelley.ross@hrtrust.org
Internet: http://www.hrtrust.org

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org

Last Updated:  3/4/2009
Copyright  1987, 1989, 1992, 2002, 2003, 2004, 2007, 2009 National Organization for Rare Disorders, Inc.

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