About Face International
Provides information and support to people with facial differences and their families.
Seeks to increase public understanding through awareness programs and education. The group provides information and emotional support to people with facial differences and their families.
Center for Young Women’s Health, Boston Children’s Hospital
This site offers friendly advice and practical tips for building a healthy body image and good self-esteem for teens with facial differences. Both females and males may find it helpful.
Information and support for people with conditions, marks or scars that affect their appearance. The organization also works to change public attitudes to make it easier to live with an unusual appearance.
Children’s Craniofacial Association
Dedicated to improving the quality of life for people with facial differences and their families. The group addresses medical, financial, emotional, social and educational concerns.
Provides information for families affected by craniofacial conditions. The site includes information about financial assistance.
This organization was started by the mother of a child with Treacher Collins syndrome who later adopted a boy with craniofacial (hemifacial) microsomia. It provides information and networking for families of children with a facial difference.
Foundation for Faces of Children
Clear, accurate information for people born with craniofacial conditions and their families. Resources include a video for families of children with clefts.
Many of these books can be checked out from the Family Resource Center at Seattle Children’s.
Children with Facial Difference: A Parent’s Guide by Hope Charkins
The mother of a child with Treacher Collins syndrome, Charkins is also a clinical social worker. Her book is an excellent resource. It deals with concrete needs such as insurance. She also offers guidance about emotions and coping.
Babyface: A Story of Heart and Bones by Jeanne McDermott
This book presents a very moving story of a mother’s experience after the birth of her child with Apert syndrome. An excellent description of a family’s joy and the agony as they deal with medical complexity while falling in love with their child.
A Different Life: Growing Up Learning Disabled and Other Adventures by Quinn Bradlee
When he was 14, Bradlee was diagnosed with a 22q11.2-related disorder (velo-cardio-facial syndrome, VCFS). It can cause a wide range of physical ailments and learning disabilities. Bradlee describes the challenges and joys of living “a different life” with disarming candor and humor.
Autobiography of a Face by Lucy Grealy
This book details the personal experience of Grealy, who was treated for bony facial cancer in childhood and went on to have reconstructive facial surgery. Provides detailed descriptions of the experience of facial difference, as well as a child’s perspective on medical care.
Changing Faces: The Challenge of Facial Disfigurement by James Partridge
At age 19, James Partridge was badly burned in a car accident, including significant damage to his face. He now directs a counseling and advocacy organization in England known as Changing Faces. This very helpful volume describes his personal experience and professional work in this organization.
Craniofacial Conditions and Your Insurance
This question-and-answer guide deals with challenging insurance-denial situations. It is prepared by Washington Appleseed and Foster Pepper.