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Facial anomalies / Craniofacial conditions

Apert Syndrome, Arhinia (absent nose), Blepharophimosis, Crouzon Syndrome,ear anomalies, Goldenhar Syndrome (hemifacial microsomia), Cleft Lip, Cleft Palate, Jackson-Weiss, Kabuki Syndrome , Nager Miller Syndrome, neurofibromatosis, Microtia (Ear Atresia), Moebius Syndrome, Opitz, Pierre Robin Syndrome, Robinow Syndrome, Romberg Syndrome, Stickler Syndrome, Sturge-Weber Syndrome, Treacher Collins syndrome, and other conditions

AboutFace International, information and emotional support to individuals with facial differences and their families
123 Edward St., Suite 1003
Toronto, Ontario, Canada M5G 1E2
Phone: 416.597.2229 or 1.800.665.3223 (FACE)
Fax: 416.597.8494
Web site:

Craniosynostosis and Positional Plagiocephaly Support
Web site:
Children's Craniofacial Association
PO Box 280297
Dallas, TX 75243-4522
(Tel) 972-994-9902
(Fax) 972-240-7607
Web Site:

World Craniofacial Foundation
7777 Forest Lane, Ste C-621
PO Box 515838
Dallas, TX 75251-5838
Phone: 972.566.6669 or 1.800.533.3315
Fax: 972.566.3850
E-mail: worldcf@worldnet.att
Web site:
Changing Faces
Phone: (0171) 706-4232
Fax: (0171) 706-4234

Craniofacial Anomalies Page, Pediatric Neurology Department, Columbia-Presbyterian Hospital, NY, includes pictorial guide to anatomy and etiology

Cleft Palate Foundation (CPF) and American Cleft Palate-Craniofacial Association (ACPA), professional association (and public service) for individuals involved in treatment and research of craniofacial anomalies

FACES: National Craniofacial Association
P. O. Box 11082
Chattanooga, TN 37401
Phone: 800.332.2373
Web site:
Let's Face It, Inc.
PO Box 29972
Bellingham, WA 98228-1972
Contact: Betsy Wilson, Director
Phone: (360) 676-7325
Web site:

National Foundation for Facial Reconstruction
317 East 34th St.
New York, NY 10016
Phone: (800) 422-3223 or (212) 263-6656
Fax: 212-263-7534

Operation Smile
Phone: (757) 635-0475
Fax: (757) 626-0368
 WideSmiles for parents of cleft-affected children
Phone and Fax: (209) 942-2872

Cleft Lip and/or Palate - extensive information


Apert Support and Information Network
Phone and Fax: (916) 961-1092
Teeter's Page support for parents of children and affected adults with Apert Syndrome
Web page:
Apert Syndrome Listserv
Crouzon Support Network
PO Box 1272
Edmonds, WA. 98020 USA
Contact: Penny Halverson
Phone: (425) 672-1697
Web page:

Ear Anomalies

Ear Anomalies Reconstructed (EAR) - The Atresia-Microtia Support Group
72 Durand Road
Maplewood, NJ. 07040
Networking and medical information for families whose members have Atresia, Microtia, or craniofacial Microsomia
Contact: Jack Gross or Betsy Olds (201) 761-5438

Goldenhar Syndrome (hemifacial microsomia)

Nager Miller Syndromes

Foundation for Nager Miller Syndromes
(800) 507-FNMS (3667)
Fax: (847) 724-6449

Neurofibromatosis - extensive information

Nose Anomalies

Pierre Robin Syndrome or Sequence (PRS)

Pierre Robin Network
PO Box 3274
Quincy, IL 62305 USA

Romberg Syndrome and links to other craniofacial conditions

Treacher Collins Syndrome - extensive resources

Other Resources:

Also See:

To locate a genetic counselor or clinical geneticist in your area:

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Genetics Education Center
University of Kansas Medical Center © 1995-2012
Debra Collins, M.S. CGC, Genetic Counselor,


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