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 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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"Resources" on this report.
Copyright 1987, 1989, 1992, 2002, 2003, 2004, 2007, 2009
NORD is very grateful to Kenneth L. McClain, MD, PhD, Professor of Pediatrics, Texas Children's Cancer Center/Hematology Service, Baylor College of Medicine, for assistance in the preparation of this report.
Synonyms of Langerhans Cell Histiocytosis
- Eosinophilic Granuloma
- Hand-Schuller Christian Syndrome
- Histiocytosis-X
- Letterer-Siwe Disease
Disorder Subdivisions
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.
Organizations related to Langerhans Cell Histiocytosis
- American Lung Association
61 Broadway, 6th Floor
New York NY 10006
Phone #: 212-315-8700
800 #: 800-586-4872
e-mail: N/A
Home page: http://www.lungusa.org
- Diabetes Insipidus Foundation, Inc.
c/o Mike Gandrud
1232 24th Street
Ames IA 50010
Phone #: 410-480-0880
800 #: --
e-mail: info@diabetesinsipidus.org
Home page: http://www.diabetesinsipidus.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: ordr@od.nih.gov
Home page: http://rarediseases.info.nih.gov/Default.aspx
- Histiocytosis Association of America
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
- Histiocytosis Association of Canada
Box 29095
Okanagan Mission RPO
Kelowan, BC None V1W 4A7
Phone #: 250--76-4-6104
800 #: N/A
e-mail: histio.canada@shaw.ca
Home page: http://www.histiocytosis.ca/
- Histiocytosis UK
25 Fox Close
Derby Intl DE24 3JE
Phone #: 44 -075-27 166185
800 #: --
e-mail: info@histiouk.net
Home page: http://www.histiocytosisuk.net/index.php
- MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay WI 54301-1243
Phone #: 920-336-5333
800 #: 877-336-5333
e-mail: mums@netnet.net
Home page: http://www.netnet.net/mums/
- March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains NY 10605
Phone #: 914-997-4488
800 #: 888-663-4637
e-mail: Askus@marchofdimes.com
Home page: http://www.marchofdimes.com
- NIH/National Heart, Lung and Blood Institute Information Center
P.O. Box 30105
Bethesda MD 20824-0105
Phone #: 301-592-8573
800 #: --
e-mail: nhlbiinfo@rover.nhlbi.nih.gov
Home page: N/A
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