A craniofacial disorder refers to a condition that affects the development or structure of the skull, face, or both, often present at birth or resulting from injury or disease. These disorders can range from a cleft lip to more complex conditions like craniosynostosis (premature fusion of skull bones) or Treacher Collins syndrome (underdeveloped facial bones).
They may impact a child’s appearance, breathing, hearing, speech, or vision, and can require medical interventions like surgery or therapy. For families, understanding these conditions involves not only managing physical challenges but also supporting the child’s emotional and social well-being as they grow. In the U.S., approximately 600,000 individuals have been diagnosed with a craniofacial condition.
Craniofacial Disorder Definitions
| Apert Syndrome A genetic disorder distinguished by abnormalities in head size and shape and fused fingers and toes. Craniosynostosis Crouzon Syndrome Deformational “Positional” Plagiocephaly Facial Paralysis Facial Reanimation |
Facial Trauma Describes any damage done to the face that could permanently change the shape of facial features as well as function of the ears, mouth, nose, or eyes. Treatment depends on the type and location of trauma. Hemifacial Microsomia Hypertelorbitism Jaw Abnormalities Microtia Pierre Robin Syndrome |
| These groups offer help navigating treatment options and emotional support through community connections. |
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| Children’s Craniofacial Association (CCA) This nonprofit offers a wide range of services, including educational materials like syndrome booklets, family networking, and an annual retreat. They also provide financial assistance for travel and lodging to help families access specialized care, aiming to empower and support those affected by facial differences.FACES: The National Craniofacial Association For over 50 years, FACES has assisted families by providing financial support for travel to medical treatments, free information on disorders and resources, and a summer camp for kids with facial differences. It’s a great option for connecting with others and easing emotional isolation.American Cleft Palate-Craniofacial Association (ACPA) ACPA is a professional society that offers family-focused resources, including printable brochures, FAQs, and guidance on cleft and craniofacial care. It’s a trusted source for medical and emotional insights.myFace This organization provides parent guides addressing common challenges, such as feeding difficulties, genetics, and fostering self-esteem. They also connect families to comprehensive craniofacial care teams and support networks. Hospital-Based Programs |
Books on Craniofacial Disorders for ParentsChildren with Facial Difference: A Parents’ Guide by Hope Charkins Wonder by R.J. Palacio The Courage to Be Kind by Jenny Levin and Rena Rosen |
Our children with Craniofacial Disorder
* Listed children often have multiple diagnoses and attention should be given to the specific information in each child’s profile.
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