Facial/ craniofacial anomalies

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

E-mail: info@aboutfaceinternational.org

Web site: www.aboutfaceinternational.org/main.html

Syndromes and Conditions

Craniosynostosis and Positional Plagiocephaly Support

Web site: www.cappskids.org/

Children's Craniofacial Association: PO Box 280297, Dallas, TX 75243-4522
Phone: 972.994.9902 - Fax 972.240.7607; Web Site: www.ccakids.com

World Craniofacial Foundation

Changing Faces

E-mail: info@changingfaces.co.uk

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

E-mail: faces@faces-cranio.org

Web site: www.faces-cranio.org

Let's Face It, Inc.: PO Box 29972, Bellingham, WA 98228-1972; Phone: 360.676.7325; Web site: www.nas.com/~letsfaceit/

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: E-mail: widesmiles@aol.com; Phone and Fax: (209) 942-2872

Branchio-Oto-Renal (BOR) syndrome

Branchio-Oto-Renal (BOR) Syndrome, Boystown Research Registry
Features of Branchio-Oto-Renal Syndrome, UK Human Genome Mapping Project Resource Centre
Branchiootorenal Syndrome, GeneClinics

Cleft Lip and/or Palate - extensive information

American Cleft Palate-Craniofacial Association/Cleft Palate Foundation (CPF / ACPA)
104 South Estes Drive, Suite 204, Chapel Hill, NC 27514 USA, (919) 933-9044, cleftline@aol.com
Cleft Palate Foundation, La Fundación del Paladar Hendido
Cleft Lip and Palate Association (CLAPA), London, UK
Cleft Lip and Palate Association of Ireland (CLAPAI)
Cleft Palate Foundation, with links to other conditions
The Smile Train, improving healthcare for children with cleft lip and palate in developing countries
Wide Smiles

Craniosynostosis

Descriptions of Conditions, Craniofacial Development and Disorders, Johns Hopkins University, also includes Timeline for Craniofacial Development, Skull Basics (anatomy, bone formation, genetics and environment), Glossary, Normal Palate Development video
Craneosinóstosis (spanish), WEBPed, Madrid (España)

Apert Syndrome

Apert Support and Information Network

E-mail: apertnet@ix.netcom.com

Phone and Fax: 916.961.1092

Teeter's Page support for parents of children and affected adults with Apert Syndrome

E-mail: catndon@apert.org

Web site: www.apert.org/

Apert Syndrome Listserv

URL: www.apert.org/listserv.htm

Crouzon Syndrome

Crouzon Support Network

PO Box 1272, Edmonds, WA. 98020 USA
Phone: 425.672.1697

E-mail: penny@crouzon.org

Web Site: www.crouzon.org/

Pfeiffer Syndrome

Pfeiffer Syndrome, Skull Base Program

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

Congenital Atresia and Microtia of the Ear, Ear Surgery Information Center
Management of Ear Microtia, Cedars-Sinai Hospital

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

Arhinia (absent nose), WideSmiles
Simply Kristi

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:

Inner Faces, theatrical performances, Forward Face, New York
List of online and offline support information (all conditions), compiled by Crouzon Syndrome Support Pages
Dental, Oral & Craniofacial Genetic Diseases, National Institute of Dental and Craniofacial Research

Children With Facial Differences: A Parent's Guide by Hope Charkins, MSW (the mother of a child with Treacher Collins syndrome), Woodbine House, Inc, Bethesda, MD, 1996, excellent practical questions for parents to ask craniofacial team members before their child undergoes surgery, discusses value of interdisciplinary team management.
Transforming Cosmetics, Inc., makeup, "The Art of Corrective Make-up" by Linda Seidel, 800-752-0066, Baltimore, MD
Clinical Cosmetology book by Victoria Rayner
Non-Chew Cook Book

Also See:

National organizations information on genetic conditions or birth defects
Genetic Conditions, Rare Conditions, Birth Defects
Evaluation of the Newborn with Single or Multiple Congenital Anomalies: A Clinical Guideline, American College of Medical Genetics Foundation Clinical Guidelines Project, New York State Department of Health

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

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