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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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Copyright 1987, 1989, 1999, 2007
Synonyms of Hydranencephaly
Disorder Subdivisions
General Discussion
Hydranencephaly is a central nervous system disorder characterized by an enlarged head and neurological deficits. The exact cause of Hydranencephaly is not known. This extremely rare form of Hydrocephalus involves the absence of portions of the brain. Results of neurologic examination in newborns may be normal or abnormal. The head usually appears enlarged at birth. Vision impairment, lack of growth and intellectual deficits are symptomatic of this disorder.
Organizations related to Hydranencephaly
- Arc (a national organization on mental retardation)
1010 Wayne Ave
Suite 650
Silver Spring MD 20910
Phone #: 301-565-3842
800 #: 800-433-5255
e-mail: info@thearc.org
Home page: http://www.thearc.org/
- Children's Brain Diseases Foundation
Parnassus Heights Medical Building
350 Parnassus Avenue, Suite 900
San Francisco CA 94117
Phone #: 415-665-3003
800 #: --
e-mail: jrider6022@aol.com
Home page: N/A
- 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
- Guardians of Hydrocephalus Research Foundation
2618 Avenue Z
Brooklyn NY 11235
Phone #: 718-743-4473
800 #: 800-458-8655
e-mail: ghrf2618@aol.com
Home page: http://www.ghrforg.org/
- Hydrocephalus Association
870 Market Street
Suite 705
San Francisco CA 94102
Phone #: 415-732-7040
800 #: 888-598-3789
e-mail: pip@hydroassoc.org
Home page: http://www.hydroassoc.org
- International Hydranencephaly Support Group
11634 203rd Street
Maple Ridge
British Columbia
None None V2X 4T9
Phone #: 604--45-9-8691
800 #: N/A
e-mail: angelbearmom@shaw.ca
Home page: http://www.hydranencephaly.com
- 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
- National Hydrocephalus Foundation
12413 Centralia
Lakewood CA 90715-1623
Phone #: 562-924-6666
800 #: 888-857-3434
e-mail: nhf@earthlink.net
Home page: http://www.nhfonline.org
- National Institute of Neurological Disorders and Stroke (NINDS)
P.O. Box 5801
Bethesda MD 20824
Phone #: 301-496-5751
800 #: 800-352-9424
e-mail: me20t@nih.gov
Home page: http://www.ninds.nih.gov/
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