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For families navigating cleft and
craniofacial conditions.

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Understanding Conditions

Learn about craniofacial conditions, diagnoses, treatment and care pathways.

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Family Support
Guides

Practical support for surgery, anxiety, hospital stays, feeding, school and wellbeing.

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Preparing
for Surgery

Simple step by step resources to help families feel prepared and informed.

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Read Stories &
Experiences

Hear from families and individuals who have walked this journey.

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Browse Conditions

Explore information in specific craniofacial conditions

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Close-up of a child's face with craniofacial features associated with Apert Syndrome.
Van der Woude Syndrome
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Stickler Syndrome
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Metopic Synostosis
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Carpenter Syndrome
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Pierre Robin Sequence
,
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Pfeiffer Syndrome
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Crouzon Syndrome
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Apert Syndrome
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Family Support Guides

Simple step by step resources to help families feel prepared and informed.

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Packing for hospital: A checklist for parents
Craniofacial surgery can be a stressful experience for both children and parents. Being prepared can make the hospital stay more comfortable for everyone.
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Supporting your child at day care or school: Suggestions for information parents could share
Starting daycare or school is an exciting step for both children and families. For children with a craniofacial condition, sharing some key information with educators and carers can help them feel confident in supporting your child.
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Capturing memories of your child’s craniofacial journey
Documenting your child’s craniofacial journey can be deeply meaningful — not only to track progress and milestones, but also to create a space for reflection, sharing, and advocacy.
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Craniosynostosis: What to expect after surgery
Craniosynostosis is a condition where one or more of the bones in a child’s skull fuse too early, before the brain has fully developed. Surgery is usually recommended to correct the head shape, relieve pressure on the brain (if present), and support normal growth and development.
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