OHSU

Resources

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.

Advocacy for insurance assistance for families

The Mission of cleft Advocate is to educate and inspire families whose lives are touched by cleft lip and/or palate or other craniofacial anomalies in order to give families the necessary tools to obtain the absolute best medical care and the best service from their insurer.

The American Cleft Palate-Craniofacial Association (ACPA) is an international non-profit medical society of health care professionals who treat and/or perform research on birth defects of the head and face, with the goal of optimizing interdisciplinary care.

Camp Korey

A camp founded in memory of a bright teenage boy who lost his battle to bone cancer at age 18. The camp is a safe haven, and completely free, community supported camp, for families dealing with childhood illness and serious medical conditions.

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.

Cleftline - Feeding your Baby with a Cleft

This resource will give you the facts you need to feed a baby with a cleft. Whether you are a new parent or caregiver, a doting relative or a health care professional, this video will guide you through the special techniques and bottles to help create an enjoyable, satisfying and productive feeding experience for a baby with a cleft palate.

Craniokids-teaching kids and families

This website was started by a family seeking more information about craniosynostosis. Their goal is to raise awareness and education through a supportive and caring environment.

Craniosynostosis

Children's hospital of Wisconsin provides more information about craniosynostosis: what it is, what causes it, the different types, and how it is diagnosed and treated.

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.

Increasing Insurance Access for Children with Craniofacial conditions

Working with Foster Pepper and Seattle Children's Hospital, Washington Appleseed to guide parents of children with craniofacial conditions to understanding the rights of individuals within the insurance system, how to challenge claim denials to ensure proper treatment and field frequently asked questions about terms and conditions of most insurance policies.

The Jorge Posada Foundation

A non profit organization established in honor of one little boy's battle with craniosynostosis. The mission is to provide education and financial support to families with children with craniosynostosis.

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.

Pierre Robin Sequence- a place of understanding 

Educating, supporting, and understanding amongst families with children who have the Pierre Robin Sequence syndrome.

Support for Oregon families affected by cleft lip and palate

US support group for those with Stickler's Syndrome

Find out how to become a member and learn about the national and local events that are providing education and support for Stickler Involved People.

Velocardiofacial Syndrome Educational Foundation

Official Web Site of the Velo-Cardio-Facial Syndrome (VCFS) Educational Foundation, Inc: an international nonprofit dedicated to support and education for all those involved in caring for people with Velo-Cardio-Facial Syndrome.