General Craniofacial Links
About Face International
Provides information and support to individuals with facial differences and their families.
About Face USA
Provides 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
Dedicated 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.
New Health Partnerships
A resource for self-advocacy in healthcare.
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.
Craniofacial Conditions and Your Insurance
Parents of children with craniofacial conditions often encounter challenging insurance-denial situations. Complicated insurance contracts and extensive lists of treatments and procedures excluded from coverage often leave parents wondering "How do I know what is covered by my insurance policy? What can I do to increase the chances my child's medical/dental bills will be covered? What do I do if my claim is denied?" Washington Appleseed and our pro bono partners at Foster Pepper have compiled a question-and-answer guide to help address these and other questions.
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.
Seattle Community Law Center
This agency will help families from start to finish with the SSI process. They not only help when a family is denied SSI benefits, but will help guide parents through the process from the beginning.
Starting Point
State resource guide for children with special health care needs.
Links for Children and Teens
Adolescent Transition Project
A resource for adolescents with special health care needs, chronic illnesses and physical or developmental disabilities.
Bandaids and Blackboards
This is a site about "growing up with medical problems... any ole type." Its goal is to help people understand what it's like, from the perspective of the children and teens who are doing just that. Includes stories, poetry, art work, tips and suggestions etc.
Center for Young Women's Health, Children's Hospital Boston
This site is not just for women and girls. It offers friendly advice and practical tips for building a healthy body image and good self esteem for teens with facial differences.
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.
Listen to Our Stories
These pages offer you the opportunity to step into the lives of some thirty young adults and children with disabilities. Here you will find poetry, essays, interviews, songs, journal writing, letters, and pictures; each tells a story about something essential — some kernel of meaning — in its young author's life.
Sesame Street Hosts Panel Discussion on Bullying
Sesame Street takes on bullying in this "Happy to Be Me" panel discussion.
Starbright World
Starbright World® (SBW) is an online community just for teens. They can chat with teenagers around the country who share their illness, meet others who are going through similar experiences, post to the bulletin boards, and even create their own blog! Starlight is a well known organization with strong connections to hospitals around the country.
Story Network
The Story Network is a community where parents of children and teens with an ongoing health condition or special need can read and tell honest, hopeful stories about day-to-day life, coping during crisis, staying strong or getting emotional support.
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.
Cleft Advocate
Provides educational and support resources for families of children with a cleft. The website 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.
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.
CHARGE Syndrome
The CHARGE Syndrome Foundation
The mission of the CHARGE Syndrome Foundation is to provide support to individuals with CHARGE syndrome and their families; to gather, develop, maintain and distribute information about CHARGE syndrome; and to promote awareness and research regarding its identificiation, cause and management.
Perkins Webcasts — CHARGE Syndrome: An Overview
A video overview of CHARGE syndrome by Pam Ryan, school psychologist at Perkins School for the Blind, Watertown, Massachusetts.
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.
The Jorge Posada Foundation
The purpose of the Jorge Posada Foundation is to reach out to families in need whose children are affected by craniosynostosis, and to provide them with emotional support through the foundation's family support network.
Facial Palsy
A Guide to Understanding Facial Palsy (PDF)
A resource for parents from the Children's Craniofacial Association.
Moebius Syndrome
Moebius Syndrome Foundation
Provides information, resources and support for children and adults with Moebius syndrome.
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.
22q11.2 Deletion Syndrome