Crouzon Syndrome

This syndrome invoves abnormal head shape due to early fusion of the skull bones. There are also certain facial features which typify this condition. Abnormal development is generally limited to the skull and face without involvement of other body regions. It may be inherited through the family. Visit these Crouzon Syndrome links to learn more:

Family: Crouzon Syndrome Introductory Article - Crouzon syndrome is a form of craniosynostosis, a group of conditions marked by abnormalities in the shape of the skull. These conditions occur when the bones of the skull, which normally are separated by a narrow space at birth, fuse together too early.

Family: Scott Summe Shares His Story - About one in every 50,000 children has Crouzon syndrome, and Scott Summe knows what that means.

Family: Janet Ayres Shares Her Story - Hello. My name is Janet. I live in Columbia, MD. My son Scott was born with Crouzon's Syndrome in 1984.

Family: Baltimore Sun Article: Champion of optimism - Disability: Battling a rare genetic disorder, Scott Summe has an upbeat spirit that has won him a spot on the Children's Miracle Network's telethon.

Family: Johns Hopkins Article: Children's Center Patient Visits White House and Disney World - Sixteen-year-old Columbia, Maryland resident Scott Summe has been selected to represent Johns Hopkins Children's Center patients during the national Children's Miracle Network broadcast.

Physician: Crouzon Syndrome Advanced Article - The main feature of Crouzon syndrome is craniosynostosis (premature fusion of two or more skull bones). Crouzon syndrome is distinguished from most other craniosynostosis syndromes by the lack of obvious hand or foot abnormalities. The manifestations of this condition are generally limited to the skull and face. However, cervical spine abnormalities are fairly common, and a smaller percentage of patients may have subtle elbow, hand, musculoskeletal, or internal anomalies.

Related Web Sites

Site	Notes
American Academy of Pediatrics Policy Statement - Bicycle Helmets	Bicycling is one of the most popular recreational sports among children in America and is the leading cause of recreational sports injuries treated in emergency departments
American Association of Neurological Surgeons and Congress of Neurological Surgeons	American Association of Neurological Surgeons (AANS) a scientific and educational association devoted to the development of neurological surgery, with more than 5,400 members in the United States and Canada
American College of Medical Genetics	Designed to bring the latest information to ACMG members and the public
Asher's Craniosynostosis Home Page	The lambdoid sutures in Ashers skull were fused. That was the first time I had ever heard the word "craniosynostosis"
Ask the Craniofacial Doc	A Q & A forum to provide general information regarding medical aspects of craniofacial conditions
Association of Birth Defect Research for Children	An area to research birth defects, or participate in the National Birth Defect Registry
Boystown National Research Hosptal	Physicians and clinicians work together to provide diagnosis and treatment for children with hearing loss
CDC: National Center on Birth Defects and Developmental Disabilities	A center established to focus on birth defects and disabilities- Created by the Children's Health Act of 2000
Center for Craniofacial Disorders, Scottish Rite (Atlanta, GA)	A craniofacial team with expertise in craniofacial, oral and maxillofacial and dental care
Changing Faces	Focus is on disfigurements affecting the face and other parts of the body or disfiguring conditions
Children's Craniofacial Association	Also:http://www.ccakids.com
COGENE: the Craniofacial and Oral Gene Expression Network	COGENE is a group of investigators involved in describing human gene expression changes that take place during early stages of development with emphasis on craniofacial development
Craniofacial diseases	Craniofacial diseases and abnormalities - conditions that involve the skull and upper face
CRANIOSUPPORT	This site offers support to families dealing with craniosynostosis.
Crouzon Support Network	A non-profit organization for individuals and families who are dealing with Crouzon Syndrome and other craniofacial anomalies
FACES: The National Craniofacial Association	A place where parents with children born with some type of anomaly affecting their face, head, and/or neck can turn for information and support
Face-To-Face	Provides a permanent and stable means of attaching ear, eye and nose prostheses for people with a congenital malformation or who have suffered a facial disfigurement due to surgery or trauma.
Friendly Faces	A resource for, and network of, individuals with facial differences, parents, families, friends, and health care professionals
Headlines Craniofacial Support	This support group provides support and information to families and individuals with any of the conditions or syndromes having Craniosynostosis
Hereditary Hearing Loss and Deafness Overview	Several hundred genes are known to cause hereditary hearing loss and deafness
National Foundation for Facial Reconstruction	Addressing the suffering of the more than 220,000 children born each year with birth defects of the head and face and the thousands more with acquired disfigurements, the NFFR lends its support to the mulidisciplinary craniofacial team at the Institute of Reconstructive Plastic Surgery at NYU Medical Center.
National Institutes of Health Office of Rare Disorders	Links to definitions, causes, treatments and publications; links to Institutes and Centers at the National Institutes of Health (NIH); links to glossary for defining technical language and an extensive list of rare diseases
OMIM 123500	Crouzon Syndrome

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Last Updated: 11/12/03

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