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When your child is diagnosed with a craniofacial condition, your questions and concerns can sometimes feel overwhelming. At Boston Children’s Hospital, our approach to treatment is more than medical and surgical care—it’s also education and support for your entire family. We hope you find these resources helpful in preparing for your visit and understanding the journey ahead.
The following resources are available at or authored by Boston Children’s Hospital. These programs and materials aim to help families better understand and cope with the medical conditions they face.
They can also help parents learn the best ways to help their children and meet with healthy siblings who may be having a difficult time.
Please note that neither Boston Children’s Hospital nor the Craniofacial Program at Boston Children’s unreservedly endorses all of the information found at the sites listed below.
Boston Children’s Craniofacial Association
FACES: The National Craniofacial Association
Federation for Children with Special Needs
Foundation for Faces of Children
Headlines: The Craniofacial Support Group
International Craniofacial Institute
MUMS National Parent-to-Parent Network
World Craniofacial Foundation
Cleft Lip and Palate Association
Cleft Palate Foundation
The Cleft Club Online Support Group
Cranio Kids: Fun Friends and Craniosynostosis Support
Craniosynostosis and Positional Plagiocephaly Support, Inc.
DailyStrength.org: Craniosynostosis & Plagiocephaly Support Group
Facebook Group: Craniosynostosis Support for Parents and Guardians
Birthmarks and Hemangiomas InterNETwork Support
Birthmarks and Hemangiomas Support Group at iVillage.com
National Organization of Vascular Anomalies
Vascular Birthmarks Foundation
Advice to Those Who Look Different
Born to be Cleft
For an appointment, more information or to obtain a second opinion for your child, please call us at 617-355-6309 or email firstname.lastname@example.org.
For families residing outside of the United States, please call Boston Children's International Health Services at 1-617-355-5209.
The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”