How do I get help for my child?
Your child should be treated by a qualified craniofacial team at a craniofacial center. Currently, FACES maintains a list of over 60 craniofacial teams located in 27 states, the District of Columbia, and Canada. Call for more information.
Am I alone?
No! There are many families and organizations who will be glad to talk with you and help you with information and support. Don't forget books, videos, and even websites. Listed below are a few general resources to get you started. You will also find support resources for specific Craniofacial Disorders .
FACES: The National Craniofacial Association
P.O. Box 11082
Chattanooga, TN 37401
We provide financial support for non-medical expenses to patients
traveling to a craniofacial center for treatment. Eligibility is based
on financial and medical need. Resources include newsletters, information
about craniofacial conditions, and networking opportunities.
Let's Face It
Excellent Resource! Very comprehensive listing of resources available for people with facial differences.
Children with Facial Difference: A Parent's Guide.
Written by Hope Charkins, MSW. Published by Woodbine House, 1996. (800) 843-7323.
Excellent resource for parents to help them cope with medical, emotional, social, educational, legal, and financial challenges presented by facial differences of their children. If you are unable to find this book in your bookstore, please make an effort to find it on Amazon.com.
Office of Rare Diseases
The Genetic and Rare Diseases Information Center
P. O. Box 8126
Gaithersburg, MD 20898-8126
Fax: (202) 966-5689
Web site: http://rarediseases.info.nih.gov
Excellent web site for finding information on a variety of craniofacial disorders, particularly very rare ones. Information specialists are available to answer your questions. Telephone operation is Monday - Friday, 12 pm to 6 pm Eastern Time. Email or fax requests for information will be answered within 5-10 working days. U.S. Mail requests will be answered within 5-10 working days. NOTE: The center does not give medical advice, provide treatment, or diagnose illness.
The Smile Train
Cleft Information Public Library
This excellent new resource has instant access to full transcripts of numerous articles and studies related to every major cleft issue. Great resource for both patients and professionals.
CPF College Scholarships
The Cleft Palate Foundation is pleased to announce the establishment of the CPF Scholarships for Students with Craniofacial Anomalies. Selection for the award will be based on past academic success, evidence of leadership skills or school/community involvement and strong indications of future academic success. An application and additional information is available on the CPF website at http://www.cleftline.org/what_we_do/awards_and_scholarships
Federation for Children with Special Needs
95 Berkeley Street, suite 104
Boston, MA 02116-3104
National Parent to Parent Organization
c/o Julie Gordon
150 Custer Court
Green Bay, WI 54301-1243
Web site: http://www.netnet.net/mums/
This organization helps you get in touch with parents in your area whose children have the same syndrome.
National Health Law Program
1101 14th Street, NW, Suite 405
Washington, DC 20005
Provides extensive information on health care law affecting families with children who have special health care needs.
NIH Clinical Research Trials
Learn about clinical trials, why they matter, and how to participate.
Patient Airlift Services
Changing lives one flight at a time
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Last modified on: Tuesday, February 08, 2011 04:36 PM
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