Groups & Sites
Cranio Kids – Craniosynostosis Support
Cranio Kids is a closed group on Facebook with over 2,000 members. This group has been set up to raise awareness of craniosynostosis, and support families affected by it.
Kids with Clefts Utah
Kids with Clefts Utah is a closed group on Facebook with over 100 members. This group enables parents meet other parents with children who have been or will be treated at Primary Children’s Medical Center.
Children’s Craniofacial Association
Children’s Craniofacial Association is a national, 501(c)3 nonprofit organization, headquartered in Dallas, Texas, dedicated to improving the quality of life for people with facial differences and their families.
This Internet safe haven is dedicated to the strength and determination of all of the people with craniofacial differences and their families.
Pierre Robin Network
Pierre Robin Network was formed in May of 1999 by the mother of a son with PRS. This organization is made up of parents, relatives, caregivers, adults with PRS and professionals who have an interest in PRS.
Velo-Cardio-Facial Syndrome Educational Foundation, Inc.
The Velo-Cardio-Facial Syndrome Educational Foundation, Inc. is an organization comprised of both professional and lay people whose purpose is to educate the public, the scientific community, families of individuals with Velo-Cardio-Facial syndrome, and individuals with Velo-Cardio-Facial syndrome (VCF) about this common genetic disorder.
Beckwith-Weidemann Children’s Foundation
This organization strives to empower those affected by Beckwith-Wiedemann Syndrome worldwide through education, support and advocacy.
American Cleft Palate – Craniofacial Association
This organization strives to advance knowledge in all aspects of patient care and research for individuals affected with cleft lip, cleft palate, and other craniofacial anomalies.
Cleft Palate Foundation
The mission of the Cleft Palate Foundation (CPF) is to serve individuals and families affected by cleft lip/palate and other craniofacial conditions by connecting them to team care, providing education, and offering personal support.
Genetics Home Reference–Pfeiffer Syndrome
Pfeiffer syndrome is a genetic disorder characterized by the premature fusion of certain skull bones (craniosynostosis). This early fusion prevents the skull from growing normally and affects the shape of the head and face. Pfeiffer syndrome also affects bones in the hands and feet.
Genetics Home Reference–Treacher Collins Syndrome
Treacher Collins syndrome is a condition that affects the development of bones and other tissues of the face. The signs and symptoms of this disorder vary greatly, ranging from almost unnoticeable to severe. Most affected individuals have underdeveloped facial bones, particularly the cheek bones, and a very small jaw and chin (micrognathia).
Genetics Home Reference–Craniofacial Microsomia
Craniofacial microsomia is a term used to describe a spectrum of abnormalities that primarily affect the development of the skull (cranium) and face before birth. Microsomia means abnormal smallness of body structures. Most people with craniofacial microsomia have differences in the size and shape of facial structures between the right and left sides of the face (facial asymmetry).
Genetics Home Reference–Crouzon Syndrome
Crouzon syndrome is a genetic disorder characterized by the premature fusion of certain skull bones (craniosynostosis). This early fusion prevents the skull from growing normally and affects the shape of the head and face.
Fibrous Dysplasia Foundation
Fibrous Dysplasia Foundation, Inc. (The FD Foundation) is a worldwide, not-for-profit, charitable organization of volunteers whose mission is to provide information, advocacy and support for patients, medical professionals and the general public and promote research for diagnosis, treatment and a cure for Fibrous Dysplasia (FD) and McCune-Albright’s Syndrome (MAS), Cherubism and related diseases. Our goal is to improve the quality of life for affected individuals and their families.
Reflections on Treacher Collins Syndrome
Treacher Collins syndrome is a genetic, craniofacial birth defect that is characterized by a range of distinctive facial anomalies. The main characteristics of TCS are downward slanting eyes, small lower jaw, and malformed or missing ears.
Operation Smile is an international children’s medical charity that performs safe, effective cleft lip and cleft palate surgery, and delivers postoperative and ongoing medical therapies to children in low and middle income countries.