Image that's a link to Genetics Education Center Support Page

Facial anomalies / Craniofacial conditions

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

Branchio-Oto-Renal (BOR) syndrome

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 site:
Apert Syndrome Listserv

Crouzon Syndrome

Crouzon Support Network
PO Box 1272, Edmonds, WA. 98020 USA
Phone: 425.672.1697
Web Site:

Pfeiffer Syndrome

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
Phone: 201.761.5438

Fryns Syndrome

Fryns Syndrome, Online Mendelian Inheritance in Man (OMIM)

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:

Revised Cannot perform flastmod(): Win32 Error Code = 87

Link that takes you to the Genetic Support Groups  Link that takes you to the Genetic Professional Home Page  Link that takes you to the Genetics Education Center Home

Genetic Conditions & Support Groups | Genetic Societies | Clinical Resources | Labs | Clinics | Genetics Education | Careers | Cytogenetics | Genome Centers | Genetic Computer Resources | Professional Education | Diversity | Advocacy | Glossaries | Advisors | Software | Disclaimer | Privacy | About | FAQ | Suggestions & Feedback | Search

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


This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.