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Copyright 1989, 1997, 1998, 1999, 2003
NORD is grateful to Betsy Ferguson, PhD, of the Oregon Health Sciences University for assistance in the preparation of this report.
Synonyms of Rapp Hodgkin Syndrome
- Ectodermal dysplasia, anhidrotic, with cleft lip and cleft palate
- Ectodermal dysplasia, Rapp-Hodgkin type
- Rapp-Hodgkin (hypohidrotic) ectodermal dysplasia syndrome
- RHS
Disorder Subdivisions
General Discussion
Rapp-Hodgkin syndrome, an extremely rare inherited multisystem disorder that is apparent at birth (congenital) or during infancy, belongs to a group of diseases known as ectodermal dysplasias. Ectodermal dysplasias typically affect the skin, teeth, hair, and/or nails. Rapp-Hodgkin syndrome is characterized by a reduced ability to sweat (hypohidrosis); an incomplete closure of the roof of the mouth (cleft palate) and/or an abnormal groove in the upper lip (cleft lip); partial or complete absence (hypodontia or partial anodontia) and/or abnormal smallness (microdontia) of primary and secondary (permanent) teeth. Infants and children with the disorder also have abnormally sparse, coarse, wiry scalp hair that is often lost prematurely during adulthood (alopecia); unusually slow-growing, improperly developed nails (dysplastic); and, in some cases, additional physical abnormalities. In most cases, Rapp-Hodgkin syndrome is inherited as an autosomal dominant trait.
Organizations related to Rapp Hodgkin Syndrome
- Cleft Palate Foundation
1504 East Franklin Street
Suite 102
Chapel Hill NC 27514-2820
Phone #: 919-933-9044
800 #: 800-242-5338
e-mail: info@cleftline.org
Home page: http://www.cleftline.org
- Craniofacial Foundation of America
975 East Third Street
Chattanooga TN 37403
Phone #: 423-778-9176
800 #: 800-418-3223
e-mail: info@craniofacialfoundation.org
Home page: http://www.craniofacialfoundation.org/www
- Ectodermal Dysplasia Society
108 Charlton Lane
Cheltenham
Glos None GL53 9EA
Phone #: +44- (0-) 1242 261332
800 #: N/A
e-mail: diana@ectodermaldysplasia.org
Home page: http://www.ectodermaldysplasia.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
- 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 Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
1 AMS Circle
Bethesda MD 20892-3675
Phone #: 301-495-4484
800 #: 877-226-4267
e-mail: NIAMSinfo@mail.nih.gov
Home page: http://www.niams.nih.gov/Health_Info
- NIH/National Institute of Dental and Craniofacial Research
None
None None None
Phone #: 301-496-4261
800 #: --
e-mail: nidcr@nih.gov
Home page: http://www.nidcr.nih.gov/
- NIH/National Oral Health Information Clearinghouse
1 NOHIC Way
Bethesda MD 20892-3500
Phone #: 301-402-7364
800 #: --
e-mail: nohic@nidcr.nih.gov
Home page: http://www.nohic.nidcr.nih.gov
- National Craniofacial Foundation
3100 Carlisle Street
Suite 215
Dallas TX 75204
Phone #: --
800 #: 800-535-3643
e-mail: N/A
Home page: N/A
- National Foundation for Ectodermal Dysplasias
410 East Main Street
PO Box 114
Mascoutah IL 62258-0114
Phone #: 618-566-2020
800 #: --
e-mail: info@nfed.org
Home page: http://www.nfed.org
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