National Organization for Rare Disorders, Inc.
It is possible that the main title of the report Diencephalic Syndrome 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.
- Diencephalic Syndrome of Childhood
- Diencephalic Syndrome of Emaciation
- Paramedian Diencephalic Syndrome
- Russell's Diencephalic Cachexia
- Russell's Syndrome
Diencephalic syndrome is a rare disorder caused by a tumor that is usually located in the diencephalon, a portion of the brain just above the brainstem. The diencephalon includes the hypothalamus and the thalamus. Affected infants and young children may develop symptoms that include the failure to gain weight and grow as would be expected based upon age and gender (failure to thrive) and abnormal progressive thinness and weakness (emaciation). Affected infants and children may behave in an alert, happy and outgoing manner, which is in contrast to their outward appearance. Additional symptoms such as vomiting, vision abnormalities, headaches, and pallor can also develop. Diencephalic syndrome can progress to cause severe, life-threatening complications. Diencephalic syndrome is treated by surgery, radiation, and/or chemotherapy. The reason for the development of the tumor that causes diencephalic syndrome is unknown. Diencephalic syndrome was first described in the medical literature in 1951 by Dr. Russell.
National Hydrocephalus Foundation
12413 Centralia Rd.
Lakewood, CA 90715-1653
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Bethesda, MD 20814
American Cancer Society, Inc.
250 Williams NW St
Atlanta, GA 30303
National Cancer Institute
6116 Executive Blvd Suite 300
Bethesda, MD 20892-8322
Children's Brain Tumor Foundation
274 Madison Avenue, Suite 1004
New York, NY 10016
Brain Tumor Foundation for Children, Inc.
6065 Roswell Road Suite 505
Atlanta, GA 30328-4015
Rare Cancer Alliance
1649 North Pacana Way
Green Valley, AZ 85614
Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Pediatric Brain Tumor Foundation
302 Ridgefield Court
Asheville, NC 28806
98 Random Farms Drive
Chappaqua, NY 10514
Friends of Cancer Research
1800 M Street NW
Suite 1050 South
Washington, DC 22202
National Brain Tumor Society
55 Chapel Street
Newton, MA 02458
Tel: (800) 770-8287
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This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".
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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
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Last Updated: 10/25/2013
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