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.

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What does Headlines provide for its members?

• Patient information leaflets
• Local days out for all ages
• Member to member support
• Annual Family Weekend
• E-newsletters
• Member magazine, ‘Headline News’
• Conference and information days
• Confidential helpline
• Facebook groups
• Young person’s programme
• Access to our Welfare Fund, which provides small grants to those experiencing financial hardship.
  

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