Important It is possible that the main title of the report Rapp Hodgkin 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.
Ectodermal dysplasia, anhidrotic, with cleft lip and cleft palate
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.
National Foundation for Ectodermal Dysplasias 6 Execuitive Drive Suite 2 Fairview Hiights, IL 62208 Tel: (618)566-2020 Fax: (618)566-4718 Email: firstname.lastname@example.org Internet: http://www.nfed.org
March of Dimes Birth Defects Foundation 1275 Mamaroneck Avenue White Plains, NY 10605 Tel: (914)997-4488 Fax: (914)997-4763 Tel: (888)663-4637 Email: Askus@marchofdimes.com Internet: http://www.marchofdimes.com
Cleft Palate Foundation 1504 East Franklin Street Suite 102 Chapel Hill, NC 27514-2820 USA Tel: (919)933-9044 Fax: (919)933-9604 Tel: (800)242-5338 Email: email@example.com Internet: http://www.cleftline.org
NIH/National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse One AMS Circle Bethesda, MD 20892-3675 USA Tel: (301)495-4484 Fax: (301)718-6366 Tel: (877)226-4267 TDD: (301)565-2966 Email: NIAMSinfo@mail.nih.gov Internet: http://www.niams.nih.gov/
NIH/National Institute of Dental and Craniofacial Research Building 31, Room 2C39 31 Center Drive, MSC 2290 Bethesda, MD 20892 USA Tel: (301)496-4261 Fax: (301)480-4098 Tel: (866)232-4528 Email: firstname.lastname@example.org Internet: http://www.nidcr.nih.gov/
Craniofacial Foundation of America 975 East Third Street Chattanooga, TN 37403 Tel: (423)778-9176 Fax: (423)778-8172 Tel: (800)418-3223 Email: email@example.com Internet: http://www.craniofacialfoundation.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/
Ectodermal Dysplasia Society Unit 1 Maida Vale Business Centre Leckhampton Cheltenham Gloucestershire England, GL53 7ER United Kingdom Tel: 4401242261332 Tel: 4407805775703 Email: firstname.lastname@example.org Internet: http://www.ectodermaldysplasia.org
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Last Updated: 4/28/2008 Copyright 1989, 1997, 1998, 1999, 2003 National Organization for Rare Disorders, Inc.
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