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Directory Sites

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.
www.pierrerobin.org
Contact a Family: Pierre Robin Syndrome
Main features of the condition and possible causes.
www.cafamily.org.uk
Chase's Story
Personal account of one child's experience of this condition. Includes photographs.
www.pierrerobin.com
NORD - Pierre Robin Syndrome
Sample report, plus links to organisations. [Fee required for full report]
www.rarediseases.org

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