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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 1992, 1994, 1995, 1998, 2000
Synonyms of Craniosynostosis, Primary
Disorder Subdivisions
- Kleeblattschadel Deformity
- Plagiocephaly
- Scaphocephaly
- Trigonocephaly
- Turricephaly
General Discussion
Primary Craniosynostosis is a rare disorder of the skull that may be inherited as an autosomal dominant or autosomal recessive genetic trait. Premature closure of the bones (sutures) in the skull result in an abnormally shaped head. The severity of symptoms and shape of the skull depend on which skull bones are prematurely closed. This disorder is present at birth.
Organizations related to Craniosynostosis, Primary
- AmeriFace
PO Box 751112
Las Vegas NV 89136
Phone #: 702-769-9264
800 #: 888-486-1209
e-mail: info@ameriface.org
Home page: http://www.ameriface.org
- American Association of Neurological Surgeons
5550 Meadowbrook Drive
Rolling Meadows IL 60008-3852
Phone #: 847-378-0500
800 #: 888-566-2267
e-mail: info@aans.org
Home page: http://www.NeurosurgeryToday.org
- Birth Defect Research for Children, Inc.
800 Celebration Ave, Suite 225
Orlando FL 34747
Phone #: 407-566-8304
800 #: --
e-mail: staff@birthdefects.org
Home page: http://www.birthdefects.org
- Children's Craniofacial Association
13140 Coit Road
Suite 517
Dallas TX 75240
Phone #: 214-570-9099
800 #: 800-535-3643
e-mail: contactCCA@ccakids.com
Home page: http://www.ccakids.com
- FACES: The National Craniofacial Association
P. O. Box 11082
Chattanooga TN 37401
Phone #: 423-266-1632
800 #: 800-332-2373
e-mail: faces@faces-cranio.org
Home page: http://www.faces-cranio.org
- Forward Face, Inc.
317 East 34th Street
Suite 901A
New York NY 10016
Phone #: 212-684-5860
800 #: 800-393-3223
e-mail: camille@forwardface.org
Home page: http://www.forwardface.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
- 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/
- Headlines - Craniofacial Support Group
128 Beesmoor Road
Frampton Cotterell
Bristol Intl BS36 2JP
Phone #: 014-54 -850557
800 #: N/A
e-mail: info@headlines.org.uk
Home page: http://www.headlines.org.uk
- 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
- 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/
- 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
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