Seattle Children’s Craniofacial Family Chat
This private Facebook group is a great network of peer support for patients and families of patients seen in the Craniofacial Center. It is administered by the Craniofacial Center’s family liaison.
General Craniofacial Links
About Face International
Provides information and support to individuals with facial differences and their families.
Provides information and emotional support to individuals with facial differences and their families, and increases public understanding through awareness programs and education.
This organization aims to help individuals living with conditions, marks or scars that affect their appearance lead full, confident and satisfying lives. Changing Faces also works to transform public attitudes toward people with an unusual appearance.
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.
Provides information for families affected by craniofacial conditions. The site includes information regarding financial assistance.
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.
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.
Washington State/King County Links
The Arc of King County
A community agency that serves children with disabilities and their families.
Behavior Support Team (BeST), Seattle Children's Home
Center for Children with Special Needs
Offers a wide variety of programs and helpful information for children with special healthcare needs, such as craniofacial conditions.
Craniofacial Conditions and Your Insurance
Parents of children with craniofacial conditions often encounter challenging insurance-denial situations. Washington Appleseed and Foster Pepper have compiled a question-and-answer guide to help address this.
LEARN Clinic, Department of Psychology, University of Washington
Outdoors for All Foundation
Parent to Parent (P2P) Support Programs of Washington State, The Arc of Washington State
Partnerships for Action, Voices for Empowerment (PAVE)
PAVE is staffed mostly by parents of children who have special needs. It aims to increase independence, empowerment and future opportunities for people with special needs and provide resources for individuals, families and communities through training, information, referral and support.
Providers of Early Intervention Services in King County (PDF) (King County Department of Community and Human Services)
Seattle Community Law Center
This agency will help families from start to finish with the SSI process, including the application process and navigating a denial of Social Security benefits.
Sibshops: For Siblings of Children with Special Health and Developmental Needs
Sound Mental Health
Washington Assistive Technology Act Program (WATAP)
Washington Information Network 2-1-1
Washington State Developmental Disabilities Council
Washington State Special Education Coalition
Links for Children and Teens
Adolescent Health Transition Project
A resource for adolescents with special healthcare needs, chronic illnesses and physical or developmental disabilities.
Bandaids and Blackboards
This is a site about "growing up with medical problems... any ol' 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.
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 healthcare needs.
Listen to Our Stories
These pages offer people the opportunity to step into the lives of 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.
Sibling Support Project
A national effort to increase peer support and information for siblings of people with special needs, and to increase parents' and providers' understanding of sibling issues.
Starbright World (SBW) is an online community just for teens 13 to 20. 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.
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.
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.
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 identification, 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.
Cleft Lip and Palate
American Cleft Palate Craniofacial Association
Association of healthcare 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.
Provides educational and support resources for families of children with a cleft. The website includes insurance and advocacy information and online family networking.
Craniosynostosis and Plagiocephaly
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.
See resources below for velo-cardio-facial syndrome (VCFS).
A Guide to Understanding Facial Palsy (PDF)
A resource for parents from the Children's Craniofacial Association.
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.
Provides medical information, networking, support, news and updates for families affected by Stickler syndrome.
22q11.2 Deletion Syndrome
Works to improve the quality of life for individuals affected by the 22q.11.2 syndromes through family and professional partnerships.
Velo-Cardio-Facial Syndrome (VCFS)
VCFS Educational Foundation
Educates the public, the scientific community, families, and individuals about this common genetic disorder.