Supporting people with craniosynostosis and rare craniofacial conditions

We are the leading UK charity supporting people with craniosynostosis and other rare craniofacial conditions. Craniosynostosis is a rare craniofacial condition where two or more plates of the skull prematurely fuse to each other, usually before birth. This results in the baby’s skull not growing properly and the newborn’s head shape being different at birth. The shape of the head may continue to change after birth as it grows.

Craniosynostosis affects 1 in 2,000 births, and up to 350 children are born with this condition in the UK every year. In rare cases, craniosynostosis occurs as part of a genetic syndrome such as Apert, Muenke, Crouzon, Saethre-Chotzen, and Pfeiffer syndromes.

Craniofacial surgery may be needed at a young age to improve the head shape of a child and reduce the possibility of developing raised intracranial pressure. In the syndromic craniosynostosis conditions, surgical intervention often continues into early adulthood. Some children may grow up with facial differences because of their condition.

We also support people affected by other rare craniofacial conditions that can affect the skull and/or face.

» Download our 'Who we are' leaflet

CONFERENCE 2020


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WHOLE CONFERENCE

Family Weekend

The Headlines Family Weekend is our main event, which we host annually and generally runs from Saturday morning to Sunday lunch time.

Please click here for more information.

Donations & Sponsorship

Headlines is almost entirely funded by donations. Continued financial support is essential to maintain the work of Headlines.

Please click here to find out how you can help.

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