PROTEUS SYNDROME
Proteus Syndrome Foundation
They have an e-mail Family Hotline and a useful online newsletter. Their Spring 2005 newsletter has a wonderful article by Susan Powell, Ph.D., titled, Fostering a Positive Sense of Self in Children with Disabilities and Physical Differences.
4915 Dry Stone Dr.
Colorado Springs, CO 80918
Web: http://www.proteus-syndrome.org