A variety of conditions
in which the bones of the skull join together too early, affecting
the development and shape of the skull. Craniosynostosis may occur
alone or as part of a genetic syndrome. Visit these Craniosynostosis
links to learn more:
| 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
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| 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
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| American Cleft Palate-Craniofacial Association |
International non-profit association of over 2,500 health care professionals in over 40 countries who are involved in treatment and/or research of cleft lip, cleft palate and other craniofacial anomalies
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| American College of Medical Genetics |
Designed to bring the latest information to ACMG members and the public
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| American Society for Deaf Children |
For the future of deaf and hard-of-hearing children
|
| Asher's Craniosynostosis Home Page |
The lambdoid sutures in AsherÂ’s skull were fused. That was the first time I had ever heard the word "craniosynostosis"
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| 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
|
| BODYMAP |
A data bank of expression information in human and mouse genes
|
| Born to be Cleft |
A personal story about being born with a cleft disorder
|
| 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
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| Cedars-Sinai Medical Center Craniofacial Clinic (Los Angeles, CA) |
A team of specialists at Cedars-Sinai Medical Genetics Birth Defects Center provides clinical services to children born with craniofacial problems
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| 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
|
| Classification of previously unclassified cases of craniosynostosis |
1474 cases in the craniofacial databank were assessed and designated as nonsyndromic but unclassifiable. Records and radiological studies were studied
|
| Cleft Lip and Palate |
Information from the Kids Health web site
|
| Cleft-Talk |
If you are a person who has been touched by cleft in any way, you may be interested in joining Cleft-Talk. Cleft-Talk is an online discussion list that will link you to other families around the world who are dealing/have dealt/will deal with the very same challenges that you face today
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| 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
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| Craniofacial & Maxiofacial Surgery in Children & Young Adults |
Center for plastic surgery
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| Craniofacial diseases |
Craniofacial diseases and abnormalities - conditions that involve the skull and upper face
|
| CRANIOSUPPORT |
This site offers support to families dealing with craniosynostosis.
|
| Craniosynostosis |
Pediatric database
|
| Crouzon Support Network |
A non-profit organization for individuals and families who are dealing with Crouzon Syndrome and other craniofacial anomalies
|
CRS1 gene
OMIM 123100 |
craniosynostosis gene
|
| 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
|
| 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
|
| International Birth Defects Informations Systems |
Birth defects and genetic disorders
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| Katilyn's Story |
Katilyn Gabrielle was born with Treacher Collins Syndrome. Read her story
|
| Kids Plastic Surgery |
A page with information about plastic surgery for children with craniosynostosis
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| 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.
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| 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
|
| NIH Taps Hopkins Craniofacial Program as |
Hopkins team uses $7.5 million to study genetics of craniofacial malformations
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| Parents of Children with Craniosynostosis |
Offering services to families in eastern Idaho and parts of Utah
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| Personal Side of Craniofacial Differences |
Dedicated to all of the people whose lives are affected by Craniofacial Disorders
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