Hay-Wells Syndrome / Disease

Diseases & Conditions

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Hay-Wells Syndrome

Synonyms of Hay-Wells Syndrome

AEC Syndrome
Ankyloblepharon-Ectodermal Defects-Cleft Lip/Palate
Hay-Wells Syndrome of Ectodermal Dysplasia

Disorder Subdivisions

General Discussion
Hay-Wells syndrome, also known as ankyloblepharon-ectodermal dysplasia-clefting (AEC) syndrome, is a rare inherited disorder that belongs to a group of disorders known as the ectodermal dysplasias. Major characteristics of Hay-Wells syndrome include sparse, coarse, wiry hair; small, sparse eyelashes; excess bands of fibrous tissue that cause the edges (margins) of the upper and lower eyelids to fuse together (ankyloblepharon filiforme adnatum); cleft palate; and less often cleft lip. Hay-Wells syndrome is inherited as an autosomal dominant trait.

The ectodermal dysplasias are a group of more than 150 related disorders that result from abnormalities during early embryonic development. Ectodermal dysplasias typically affect the hair, teeth, nails, and/or skin. The ectodermal dysplasias are inherited disorders, but the pattern of inheritance is varied.

Organizations related to Hay-Wells Syndrome

Cleft Palate Foundation
1504 East Franklin Street
Chapel Hill NC 27514-2820
Phone #: 919-933-9044
800 #: 800-242-5338
e-mail: [email protected]
Home page: http://www.cleftline.org
Craniofacial Foundation of America
975 East Third Street
Chattanooga TN 37403
Phone #: 423-778-9192
800 #: 800-418-3223
e-mail: [email protected]
Home page: http://www.craniofacialcenter.com
Ectodermal Dysplasia Society
108 Charlton Lane
Glos. None GL53 9EA
Phone #: +44- 12-42 261332
800 #: N/A
e-mail: [email protected]
Home page: http://www.ectodermaldysplasia.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: [email protected]
Home page: http://www.netnet.net/mums/
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains NY 10605
Phone #: 914-428-7100
800 #: 888-663-4637
e-mail: [email protected]
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: [email protected]
Home page: http://www.niams.nih.gov/Health_Info
NIH/National Oral Health Information Clearinghouse
1 NOHIC Way
Bethesda MD 20892-3500
Phone #: 301-402-7364
800 #: --
e-mail: [email protected]
Home page: http://www.nohic.nidcr.nih.gov
National Craniofacial Foundation
3100 Carlisle Street
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
Mascoutah IL 62258-0114
Phone #: 618-566-2020
800 #: --
e-mail: [email protected]
Home page: http://www.nfed.org

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders, Inc. ? (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html