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General Craniofacial Links

About Face International
Provides information and support to individuals with facial differences and their families.

About Face USA
Pprovides information, emotional support and educational programs to individuals who have a facial disfigurement and to their families. Resources include online fact sheets and a free newsletter for families.

Changing Faces
Although primary focus is on disfigurements affecting the face, much of their work has relevance to disfigurements of other parts of the body. They address disfigurements of any origin, whether present at birth or acquired later in life.

Children's Craniofacial Association
Sedicated to improving the quality of life for people with facial differences and their families. Addresses the medical, financial, psychosocial, emotional and educational concerns relating to craniofacial conditions.

FACES
Provides information for families affected by craniofacial conditions. The site includes information regarding financial assistance.

Friendly Faces
Started by the mother of a child with Treacher Collins syndrome who later adopted a boy with hemifacial microsomia. Provides information and networking to families of children with a facial difference.

Let's Face It
Nonprofit network that links people with facial disfigurement and all who care for them to resources that can enrich their lives.

Washington State / King County links

The Arc of King County
A community agency that serves children with disabilities and their families.

Center for Children with Special Health Care Needs
Offers a newsletter for professionals who work with special needs children and has a wide variety of programs and helpful information.

Parents are Vital in Education
Exists to increase independence, empowerment and future opportunities for consumers with special needs, their families and communities, through training, information, referral and support.

Starting Point
State resource guide for children with special health care needs.

Working Together Successfully
How to become a successful negotiator.

Links for Children and Teens

Adolescent Transition Project
A resource for adolescents with special health care needs, chronic illnesses and physical or developmental disabilities.

Kids as Self Advocates
Created by youth with disabilities for youth to educate society about issues concerning youth with a wide spectrum of disabilities and special health care needs.

General Medical Links

Geneclinics
A clinical information resource relating genetic testing to the diagnosis, management and genetic counseling of individuals and families with specific inherited disorders.

OMIM Database
Online Mendelian Inheritance in Man database is a catalog of human genes and genetic disorders, listing studies and case descriptions.

Cleft Lip and Palate

American Cleft Palate Craniofacial Association
Association of health care professionals involved in treating children with craniofacial conditions. Resources include online fact sheets related to treatment and care as well as psychosocial issues. Available in Spanish.

Birth Defects Toolkit: Cleft Lip and Palate
Offers specific information on cleft lip and palate and many useful resources to both professionals and parents who are involved with the care of children with chronic health care conditions.

Cleft Advocate
Provides educational and support resources for families of children with a cleft. The Web site includes insurance and advocacy information and online family networking.

Foundation for Faces of Children
Provides clear, accurate information and other educational resources to individuals born with craniofacial conditions and to their families. Resources include a video for families of children with clefts.

Wide Smiles
Created for families of children with a cleft. The site has photos, support, information and chat groups.

Apert Syndrome

Apert Syndrome
Sponsored by parents of children with Apert syndrome, this site contains links to clinical information as well as personal Web pages about families and their experience with Apert syndrome.

Craniosynostosis and Plagiocephaly

Cranio Kids
Started by parents who began researching and looking for others who have had experience with craniosynostosis, this site is intended to be a supportive but laid-back and fun environment where families and friends can enjoy each other's company.

Pierre Robin Sequence

Pierre Robin Network
A nonprofit organization formed by the mother of a child with Pierre Robin sequence to network families and provide educational information.

Stickler Syndrome

Sticklers
Provides medical information, networking, support, news and updates for families affected by Stickler syndrome.

Velocardiofacial Syndrome

VCFS Educational Foundation
Purpose is to educate the public, the scientific community, families of individuals with velocardiofacial syndrome and individuals with velocardiofacial syndrome about this common genetic disorder.