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Copyright 1992, 1997, 1998, 2005
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
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
- 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/
- 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 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 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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