Pierre Robin Network Provides general information about the condition, including genetics, issues and a glossary. Also offers an email group, message board, and personal accounts. http://www.pierrerobin.org

Contact a Family: Pierre Robin Syndrome Main features of the condition and possible causes. http://www.cafamily.org.uk/Direct/p24.html

Chase's Story Personal account of one child's experience of this condition. Includes photographs. http://www.pierrerobin.com

NORD - Pierre Robin Syndrome Sample report, plus links to organisations. [Fee required for full report] http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Pierre%20Robin%20Syndrome

NORD: Moyamoya Disease Sample report, plus links to organisations. [Fee required for full report] http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Moyamoya%20Syndrome