About Children’s Craniofacial Association

Empowering and giving hope to individuals and families affected by facial differences

Children’s Craniofacial Association
13140 Coit Road, Suite 517
Dallas, TX 75240

Toll-free: 800.535.3643
Phone: 214.570.9099
Fax: +214.570.8811

Children’s Craniofacial Association is a national, 501(c)3 nonprofit organization, headquartered in Dallas, Texas, who’s mission is to empower and give hope to individuals and families affected by facial differences. Nationally and internationally, CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions. The goal of CCA is a world where all people are accepted for who they are, not how they look.

CCA Resources

Link: Resources on

Syndrome Booklets

CCA has published a series of fourteen educational booklets for parents, which explain various craniofacial conditions and regarding treatment.

  1. A Guide To Understanding Apert Syndrome
    Apert syndrome is a condition involving abnormal growth of the skull and the face due to early fusion of certain sutures of the skull. […]
  2. A Guide To Understanding Cleft Lip and Palate
    Cleft Lip and/or Palate is a separation of the parts or segments of the lip or roof of the mouth, which are usually joined together during the early weeks in the development of an unborn child. […]
  3. A Guide To Understanding Craniosynostosis
    Craniosynostosis means fused bones of the skull. It is a condition that some children are born with or later develop. […]
  4. A Guide To Understanding Crouzon Syndrome
    Crouzon syndrome is a condition in which sutures in the head are prematurely fused resulting in abnormal growth of the skull and face. […]
  5. A Guide To Understanding Facial Palsy
    Facial Palsy is a congenital deformity that dates from birth, or an acquired deformity, which causes complete or partial paralysis of the facial motion. […]
  6. A Guide To Understanding Fibrous Dysplasia
    Fibrous Dysplasia is a condition of the skeleton (bones). It is a birth defect that is a non-cancerous disease. […]
  7. A Guide To Understanding Frontonasal Dysplasia
    Frontonasal Dysplasia, also known as Median Cleft Face Syndrome, is a condition in which the nose has a flat, wide appearance, and the eyes may be wide-set. […]
  8. A Guide To Understanding Hemangiomas
    Hemangioma is a non-malignant tumor that is made up of rapidly growing endothel or vascular cells.
  9. A Guide To Understanding Hemifacial Microsomia
    Hemifacial Microsomia/Goldenhar Syndrome is a condition in which the lower half of one side of the face does not grow normally. […]
  10. A Guide To Understanding Microtia
    Microtia/atresia – Microtia is an incompletely formed ear. It may be just a small ear, or other variations including having only a bump of tissue at the location where the ear should normally be found.
  11. A Guide To Understanding Moebius Syndrome
    Moebius syndrome is a rare congenital (present at birth) developmental disorder, characterized by absence or underdevelopment of the nerves that control facial (cranial nerve 7) and eye movements (cranial nerve 6). […]
  12. A Guide To Understanding Pfeiffer Syndrome
    Pfeiffer syndrome is a condition in which certain sutures are fused prematurely. […]
  13. A Guide To Understanding Pierre Robin Sequence
    Pierre Robin Sequence is a condition in which the lower jaw is abnormally small. […]
  14. A Guide To Understanding Treacher Collins Syndrome
    Treacher Collins is a condition in which the cheek-bones and jawbones are underdeveloped. […]

One Page Overviews

CCA offers one-sheet overviews which address a variety of medical, emotional and psychosocial issues related to having a craniofacial condition. We currently offer the following overviews:

  • Sleep Apnea
  • What to Expect When Your Child Goes to Surgery
  • What to Bring to the Hospital
  • Parents: You are the Official Care Manager!
  • Empowering Children to Cope with Teasing
  • Apert Feet
  • A Parent’s Journey to Acceptance
  • Anthropology and Craniofacial Anomalies
  • Cleidocranial Dysplasia
  • Dramatically Increasing the Quality of Life with Prosthestic Devices
  • Hydrocephalus
  • Tips on Dealing With An External Distraction Device
  • Fostering Tolerance: Ways Parents and Kids Can Stand Up to Bullying

Family Networking

Many families that have a member with a craniofacial condition feel isolated and alone. With Family Networking and social networking, family members are connected with others in similar situations in order to:

  • share emotional support,
  • discuss problems, and
  • identify resources.

Being able to communicate with other parents, siblings, or patients can help you feel part of a larger community with others who are ready to help them through rough times, work through decisions and just “be there” for one another.

Getting networked is just a phone call or key stroke away. Click on registration or call 800.535.3643 and ask for Annie Reeves. CCA maintains a list of moms, dads and children interested in communicating with others. That will match you as closely as they can to someone having similar experiences.