Facial/ craniofacial anomalies

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

Contact: Betsy Wilson, Director

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

Cleft Lip and/or Palate - extensive information

Cleft Palate Foundation (Canada) (800) 24-CLEFT
Cleft-Talk Mailing List for people affected by facial clefts
Cleft Palate Foundation (CPF) and American Cleft Palate-Craniofacial Association (ACPA)

Craniosynostosis

Craneosinóstosis (spanish), WEBPed

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 page: www.apert.org/

Apert Syndrome Listserv

URL: www.apert.org/listserv.htm

Crouzon Syndrome

Crouzon Support Network

PO Box 1272
Edmonds, WA. 98020 USA
Contact: Penny Halverson
Phone: (425) 672-1697

E-mail: penny@crouzon.org

Web page: www.crouzon.org/

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

Arhinia (absent nose), WideSmiles

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:

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

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

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