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    Diencephalic Syndrome

    Important
    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.

    Synonyms

    • Diencephalic Syndrome of Childhood
    • Diencephalic Syndrome of Emaciation
    • Paramedian Diencephalic Syndrome
    • Russell's Diencephalic Cachexia
    • Russell's Syndrome

    Disorder Subdivisions

    • None

    General Discussion

    The diencephalic syndrome is a very rare neurological disorder characterized by failure to thrive, abnormal thinness (emaciation), amnesia, intense sleepiness, unusual eye position and sometimes blindness. It is normally seen in infancy or early childhood but some cases have been reported in older children and even adults. Diencephalic syndrome is usually caused by a brain tumor such as a low-grade glioma or astrocytoma.

    Resources

    National Hydrocephalus Foundation
    12413 Centralia Rd.
    Lakewood, CA 90715-1653
    USA
    Tel: (562)924-6666
    Fax: (562)924-6666
    Tel: (888)857-3434
    Email: nhf@earthlink.net
    Internet: http://www.nhfonline.org

    Hydrocephalus Association
    4340 East West Highway Ste 950
    Bethesda, MD 20814
    USA
    Tel: (301)202-3811
    Fax: (301)202-3813
    Tel: (888)598-3789
    Email: info@hydroassoc.org
    Internet: http://www.hydroassoc.org

    American Cancer Society, Inc.
    250 Williams NW St
    Ste 6000
    Atlanta, GA 30303
    USA
    Tel: (404)320-3333
    Tel: (800)227-2345
    TDD: (866)228-4327
    Internet: http://www.cancer.org

    Children's Brain Tumor Foundation
    274 Madison Avenue, Suite 1004
    New York, NY 10016
    United States
    Tel: (212)448-1595
    Fax: (212)448-1022
    Tel: (866)228-4673
    Email: info@cbtf.org
    Internet: http://www.cbtf.org

    Brain Tumor Foundation for Children, Inc.
    6065 Roswell Road Suite 505
    Atlanta, GA 30328-4015
    USA
    Tel: (404)252-4107
    Fax: (404)252-4108
    Email: info@braintumorkids.org
    Internet: http://www.braintumorkids.org

    Rare Cancer Alliance
    1649 North Pacana Way
    Green Valley, AZ 85614
    USA
    Internet: http://www.rare-cancer.org

    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
    Internet: http://rarediseases.info.nih.gov/GARD/

    Madisons Foundation
    PO Box 241956
    Los Angeles, CA 90024
    Tel: (310)264-0826
    Fax: (310)264-4766
    Email: getinfo@madisonsfoundation.org
    Internet: http://www.madisonsfoundation.org

    Pediatric Brain Tumor Foundation
    302 Ridgefield Court
    Asheville, NC 28806
    Tel: (828)665-6891
    Fax: (828)665-6894
    Tel: (800)253-6530
    Email: pbtfus@pbtfus.org
    Internet: http://www.pbtfus.org

    Friends of Cancer Research
    1800 M Street NW
    Suite 1050 South
    Washington, DC 22202
    Tel: (202)944-6700
    Email: info@focr.org
    Internet: http://www.focr.org

    National Brain Tumor Society
    55 Chapel Street
    Suite 200
    Newton, MA 02458
    Tel: (617)924-9997
    Fax: (617)924-9998
    Tel: (800) 770-8287
    Email: info@braintumor.org
    Internet: http://www.braintumor.org

    For a Complete Report:

    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".

    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: 6/25/2008
    Copyright 1993, 1995, 2003 National Organization for Rare Disorders, Inc.

    WebMD Medical Reference from the National Organization for Rare Disorders

    Last Updated: May 28, 2015
    This information is not intended to replace the advice of a doctor. Healthwise disclaims any liability for the decisions you make based on this information.

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