Get Help
Paying the Bills | Travel & Lodging | Research | Camps & Retreats | Scholarships | Other Organizations
​
How do I get help for my child or myself?
It is important to be treated by qualified doctors and teams at craniofacial centers that are familiar with specific medical conditions. Currently, FACES maintains a list of many of these teams. Contact Us for more information.
FACES provides financial assistance for medically necessary travel to children and adults throughout the United States with severe craniofacial anomalies resulting from birth defects, injuries, or disease. Contact Us for more information, or Apply Now.
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, websites, and even Facebook. Listed below are a few general resources to get you started. You will also find support resources for specific craniofacial disorders on the Craniofacial Anomalies page.
​
Clinical Trials
Databases of privately and publicly funded clinical studies conducted around the world.
Website: www.centerwatch.com
Website: clinicaltrials.gov
Federation for Children with Special Needs
Phone: (617) 482-2915
Email: FCSNinfo@fcsn.org
Website: www.fcsn.org
National Health Law Program
Provides extensive information on health care law affecting families with children who have special health care needs.
Phone: (202) 289-7661
Website: www.healthlaw.org
Patient Advocate Foundation
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.
Phone: (800)532-5274
Email: help@patientadvocate.org
Website: www.patientadvocate.org
​
Born a Hero
Research Foundation with a mission to accelerate innovation and research to improve the quality of life for patients with FGFR Syndromes, including Pfeiffer Syndrome.
Website: www.bornahero.org
PROS Foundation
A 501(c)(3) non-profit corporation, whose mission is to help prepare patient advocacy groups for clinical trials.
Website: prosfoundation.org
Children with Facial Difference:
A Parent's Guide
Written by Hope Charkins, MSW. Excellent resource for parents to help them cope with medical, emotional, social, educational, legal, and financial challenges presented by facial differences of their children. Order from Amazon.com if you cannot find it in your local bookstore.
