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 410 East Main Street Mascoutah, IL 62258-0114 Tel: (618)566-2020 Fax: (618)566-4718 Email: email@example.com 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: firstname.lastname@example.org 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: email@example.com 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: firstname.lastname@example.org 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, GL53 9ER England Tel: +44 (0) 1242 261332 Fax: +44 (0) 1242 261332 Email: email@example.com Internet: http://www.ectodermaldysplasia.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 firstname.lastname@example.org
Last Updated: 4/28/2008 Copyright 1989, 1997, 1998, 1999, 2003 National Organization for Rare Disorders, Inc.
How this information was developed to help you make better health decisions.
Healthwise, Healthwise for every health decision, and the Healthwise logo are trademarks of Healthwise, Incorporated.