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FACES: The National Craniofacial Association
(423) 266-1632
(800) 332-2373
P.O. Box 11082, Chattanooga, TN 37401





Helpful Resources

Resources to Research Craniofacial Disorders
Travel & Lodging Services
Medical Grants for Children

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 many of these teams. Call1-800-332-2373 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
(800) 332-2373
email: faces@faces-cranio.org
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.

Children with a Facial Difference

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.

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Resources to Research Craniofacial Disorders:

Genetics Home Reference
ghr.nlm.nih.gov
A guide to understanding genetic conditions. Please remember to look at the dates of the research and pay the closest attention to the more recent findings.

OMIM
www.ncbi.nlm.nih.gov/omim
OMIM is a comprehensive, authoritative compendium of human genes and genetic phenotypes that is freely available and updated daily. OMIM is authored and edited at the McKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University School of Medicine, under the direction of Dr. Ada Hamosh.

Please remember to look at the dates of the research and pay the closest attention to the more recent findings.

PubMed
www.ncbi.nlm.nih.gov/pubmed
PubMed comprises more than 24 million citations for biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full-text content from PubMed Central and publisher web sites.

Please remember to look at the dates of the research and pay the closest attention to the more recent findings.

Office of Rare Diseases
The Genetic and Rare Diseases Information Center
P. O. Box 8126
Gaithersburg, MD 20898-8126
(888) 205-2311
Fax: (202) 966-5689
Email: gardinfo@nih.gov
Web site: 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
Online Medical Cleft 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 www.cleftline.org/what_we_do/awards_and_scholarships

Federation for Children with Special Needs
95 Berkeley Street, suite 104
Boston, MA 02116-3104
(617) 482-2915
email: FCSNinfo@fcsn.org
Web site: www.fcsn.org

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National Health Law Program
1101 14th Street, NW, Suite 405
Washington, DC 20005
(202) 289-7661
Web site: www.healthlaw.org
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.
Web site: www.nih.gov/health/clinicaltrials

Patient Advocate Foundation
421 Butler Farm Road
Hampton, VA 23666
(800)532-5274
email: help@patientadvocate.org
website: www.patientadvocate.org
Patient Advocate Foundation is a national, non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment, and preservation of their financial stability. Patient Advocate Foundation serves as an active liaison between patients and their insurer, employer and/or creditors to resolve insurance, job retention, and/or debt crisis matters relative to their diagnosis through case managers and attorneys.

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TRAVEL & LODGING SERVICES

Patient Airlift Services
Changing lives one flight at a time
516-300-1660
Web site: www.palservices.org

Miracle Flights
Turning miles into smiles
(702) 261-0494 or toll free (800) FLY-1711
Web site: www.miracleflights.org

National Patient Travel Center
Web site: www.patienttravel.org

Healthcare Hospitality Network
The Healthcare Hospitality Network, Inc. (HHN) is a nationwide professional association of nearly 200 unique, nonprofit organizations that provide lodging and support services to patients, families and their loved ones who are receiving medical treatment far from their home communities.
1-800-542-9730
Web site: www.hhnetwork.org

Find a Ronald McDonald House
Web site: www.rmhc.org/ronald-mcdonald-house

Mercy Medical Anglels
America's Charitable Medical Transportation System
1-888-675-1405
Web site: mercymedical.org

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UnitedHealthCare
Children's Foundation

The UnitedHealthcare Children’s Foundation (UHCCF) is a 501(c)(3) charitable organization that provides medical grants to help children gain access to health-related services not covered, or not fully covered, by their family’s commercial health insurance plan.

Please call and leave us a message. A Foundation representative will return your call within five business days.
1 855-MY-UHCCF / 1 (855-698-4223)
customerservice@uhccf.org
www.uhccf.org

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