About the Foundation
How does the World Craniofacial Foundation help patients and their families?
We provide:
- Access to innovative surgical care for children and adults with abnormalities of the head and/or face
- Emotional support to patients and their families
- Funding (cash or in-kind gifts) for transportation, lodging, meals and ancillary needs of patients and their families as they pursue treatment
- Funding/fellowship programs for physicians undergoing advanced craniofacial training
- Education about craniofacial abnormalities and treatment to patients, their families, government agencies, insurance companies, physicians in training and the public
- Support for and distribution of craniofacial research to the medical community, government agencies, insurance companies, patients and their families
- Advocacy for superb craniofacial patient care worldwide
Does the World Craniofacial Foundation ever turn away children who have head and facial abnormalities?
No. We do our very best to accommodate the needs of each child with a craniofacial difference who seeks our help.
What is the World Craniofacial Foundation's long-term vision?
Our 10-year plan includes encouraging and supporting craniofacial centers of excellence around the world in order to help children who have nowhere else to turn. Learn more about our vision.
How can I help?
The World Craniofacial Foundation relies on volunteers and financial support to help children with severely deformed faces and heads. Please call us at 972.566.6669 or toll-free at 1.800.533.3315 to learn about volunteer opportunities. You can also donate financially.
About Craniofacial Surgery & Outreach
How prevalent are craniofacial abnormalities?
One out of every 500 newborns today has a craniofacial or clefting deformity. In the United States alone, more than 12,000 newborns each year will need the specialized care of a craniofacial team. In addition to those children born with craniofacial abnormalities, many children and adults suffer craniofacial abnormalities due to injury.
Are these procedures covered by insurance?
Unfortunately, many families do not have insurance coverage, or the condition is considered "aesthetic" and not life-threatening so coverage is not available. We do not want even one child to go through life with a face that was not transformed because funds were unavailable.
Is craniofacial surgery simply cosmetic surgery?
No. Abnormalities of the head and face can obstruct the trachea, cause blindness by putting pressure on the optic nerve, place serious pressure on the brain resulting from a severely misshapen skull, and more.
Can these abnormalities be life threatening?
Yes. In fact, many children born with craniofacial abnormalities do not live to adulthood.
Does one surgery correct the problem?
No. A typical patient needs five to 20 corrective surgeries as he or she grows, creating a long-term responsibility to each child.
Do hospitals and surgeons donate their services for these types of procedures?
While many facilities and physicians have been extremely generous, not all services can be donated. Millions of dollars are needed each year to cover foundation services.
What other types of services are donated?
Generous donors have given hotel and transportation services. However, the need remains greater than the donated resources available.
What conditions can be treated?
We treat nearly all birth-related and acquired abnormalities of the head and face – including trauma, degenerative diseases and tumors. Here is a partial list of the conditions for which we provide support:
- Cleft lip and palate
- Apert syndrome
- Crouzon syndrome
- Craniosynostosis
- Hypertelorism
- Treacher Collins syndrome
- Hemifacial microsomia
- Jaw abnormalities
- Trauma
- Hemifacial atrophy
- TMJ disorders
- Malocclusion
- Neurofibromatosis
- Fibrous dysplasia
- Brain-related tumors
- Cranial base tumors
- Malignant tumors
What type of treatment team is required?
Correcting these abnormalities takes the specialized care of a multidisciplinary craniofacial team. Depending on the severity of the deformity, the team members can include:
- Anthropologist
- Craniofacial surgeon
- Geneticist
- Medical artist
- Neuroradiologist
- Orthodontist
- Otolaryngologist
- Pediatric anesthesiologist
- Pediatric neurosurgeon
- Pediatric nurse
- Pediatrician
- Pedodontist
- Photographer
- Social worker
- Speech pathologist