Patient resources for Craniosynostosis
Places to find practical help and support. Each organization sets its own services and eligibility.
Communities and additional support
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ACT (Advancing Craniosynostosis Treatment) Rare Diseases Consortium
Condition-specific resource · Based in the United States
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Boston Children's Hospital Craniosynostosis Research Program (CRDC)
Condition-specific resource · Based in the United States
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Craniosynostosis.net (University Health San Antonio)
Condition-specific resource · Based in the United States
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AboutFace (AboutFace Craniofacial Family Society)
General support
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American Cleft Palate-Craniofacial Association (ACPA)
General support · Based in the United States
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AmeriFace
General support · Based in the United States
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Apert International, Inc.
General support · Based in the United States
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Children's Craniofacial Association (CCA)
General support · Based in the United States
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Cranio Care Bears
General support · Based in the United States
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Foundation for the Faces of Children
General support · Based in the United States
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myFace (formerly National Foundation for Facial Reconstruction)
General support · Based in the United States
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World Craniofacial Foundation
General support · Based in the United States
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Cranio Families Craniosynostosis Help
Condition-specific resource · Peer support
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Cranio Kids - Craniosynostosis Support
Condition-specific resource · Peer support
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Craniosynostosis Support for Parents and Guardians
Condition-specific resource · Peer support
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Inspire - Preemie Community (craniosynostosis discussions)
Condition-specific resource · Peer support
Visit peer community -
CAPPSKIDS Support Groups (multiple, by suture type)
General support · Peer support
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Further information
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GARD condition information
Condition-specific resource
Read condition information -
Orphanet condition information
Condition-specific resource
Read condition information
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