Resources for information regarding cleft lip and palate and craniofacial anomalies are available from a variety of sources. The following is a list of some of the national organizations that can be helpful in providing information and resources. This list is not inclusive by any means. In fact, there are many local and state organizations that can provide information and support. Information on the other organizations and resources can be found on may of the web sites listed.
AboutFace is an organization of individuals and families who have experienced the challenges of facial differences. This organization provides emotional support, information services, and educational programs about living with facial differences. About Face focuses on syndromes and conditions, psychosocial issues, public awareness, and integration issues. It provides a variety of resources, including newsletters, videotapes, and publications. There is a national chapter network for local access and networking.
For further information:
Phone(800) 665-FACE (800)-665-3223 or (416)-597-2229
Fax: (416)597-8494
E-mail info@aboutfaceinternational.org
Website: http://www.aboutfaceinternational.org
Address: 123 Edward Street, Suite 1003
Toronto, ON, Canada, M5G 1E2
The American Cleft Palate-Craniofacial Association (ACPA) is a professional organization, founded in 1943, which includes all disciplines involved in the care and treatment of the cleft palate and craniofacial anomalies. members are from the United States and from over 40 countries all over the world. Membership is open to individuals who are qualified to treat or conduct research ion the areas of cleft lip, cleft palate, and other craniofacial anomalies. ACPA is dedicated to the study and treatment of all aspects of craniofacial anomalies, including cleft lip, and palate. The organization has worked toward establishing standards of care for patients with craniofacial anomalies. Clinical and research information is shared through its quarterly Cleft Palate-Craniofacial Journal. Annual professional meetings are held at various locations around the country for the purpose of sharing and exchanging clinical information and the latest research findings.
For further information
Phone: (919)933-9044
E-mail: info @acpa-cpf.org
Address: 1504 East Franklin Street, Suite 102
Chapel Hill, NC 27514-2820
The Cleft Palate Foundation (CPF) is a group that is associated with the American Cleft Palate-Craniofacial Association. The CPF has the mission of serving as a resource to families and professionals around the country. Services include a 24 hour toll free phone number (CLEFT-LINE) that is available to both families and professionals who are seeking information about the evaluation or treatment of individuals with cleft lip. cleft palate, or other craniofacial birth defects. In addition, the CPF provides consumers with booklets on all aspects of the cleft lip and palate (available in English and Spanish), craniofacial anomalies, and related syndromes. They provide a bibliography from parents of children with cleft lip/palate and a catalog of informational videocassettes. they can refer families to local and national support groups. Finally, the CPF provides consumers with a list of guidelines for choosing a medical team for cleft palate and craniofacial anomaly teams in the patent's area.
For further information:
Phone (919) 933-9044
Fax: (919) 933-9604
E-mail info@cleftline.org
Website: http://www.cleftline.org
Address: 1504 East Franklin Street, Suite 102
Chapel Hill, NC 27514-2820
Children's Craniofacial Association (CCA) offers assistance with doctor referrals and non medical assistance. There are annual family retreats and educational programs. The organization has publications about various craniofacial syndromes.
For further information:
Phone: (800) 535-3643 or (214)570-9099
Fax: (214) 570-8811
E-mail contact CCA@ccakids.com
Website: 13140Coit Road, Suite 307
Dallas, TX 75240
FACES: The National Craniofacial Association: is a nonprofit organization that serves children and adults with craniofacial disorders by acting as a clearinghouse of information on specific disorders and available resources, providing networking, opportunities with other families, publishing a quarterly newsletter, and providing financial assistance to families who cannot afford to travel away from home to a specialized craniofacial medical center.
For further information:
Phone (800) 3FACES3 (800)-332-2373
E-mail: faces@faces-cranio.org
Address P.O. Box 11082
Chattanooga, TN 37401
Let's Face It: is an information and support network for people with facial differences, their families, and professionals. Once a year, this organization publishes an extensive manual of organizations and resources for individuals with facial differences/ To be places on their mailing list, just send an e-mail address.
For Further information:
University of Michigan
School of Dentistry/Dentistry Library
1011 N. University
Ann Arbor, MI 48109-1078
Parents Helping Parents (PHP) is a parent-directed family resource center serving children with special needs, their families, and the professionals who serve them.. This organization provides parent and professional training on how to begin and maintain a parent support network. Publications are available for training and information.
For further information:
Phone: (408) 727-5775
Fax: (408) 727- 0182
E-mail: info@php.com
Website: http://www.php.com
Address: 2041 Olcott Street
Santa Clara, CA 95054
Smile Train has a free online library and links for articles form around the world on the cause and treatment of clefts. They also have informational booklets for families.
For further information:
Phone: (877) KID-SMILE or (212)689-9199
E-mailL info@smiletrain.org
Website: htpp://www.smiletrain.org
Address: 245 Fifth Avenue Suite 2201
New York, NY 10016
Wide Smiles is a nonprofit organization that is supported through contributions. Is purpose is to provide resources for individuals and family members with a history of cleft lip and plate.
For further information:
Phone: (209) 942-2812
E-mail josmiles@yahoo.com
Website: http://www.widesmiles.org
Address: P.O. Box 5153
Stockton, CA 95205-0153
Information cited : Kummer, A. 2008, Cleft Palate and Craniofacial anomolies:Effects on speech and resonance, Delmar: Clifton Park, New York.
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