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Headlines Craniofacial
Support, Gil Ruff, Frampton Cotterell, Bristol, BS36 2JP. Click
here for the Headlines website
When
a child is diagnosed as having a condition involving craniosynostosis - the
premature fusion of the bones of the skull - it can be a stressful time for all
the family.
Whether the craniosynostosis is present by
itself or as part of a wider set of features or a "syndrome", there may be many
implications for the child's future.
These
conditions are rare and the surgery required is extremely specialist, with
advances being made all the time. Sometimes the local medical team who make the
initial diagnosis may not have an up-to-date information to offer.
It is
easy for parents to feel isolated or "blinded" by science.
The
Craniofacial Support Group was set up in 1993 by a group of parents whose
children were affected by a whole range of conditions involving
craniosynostosis.
Whether a family feels they need more
information, or would simply like to find a friendly and sympathetic voice to
talk to, Headlines aims to be there for them.
In
addition to providing for families, the group aims to raise the awareness and
understanding of craniofacial conditions amongst the public and health
professionals.
 What Conditions are Covered?
- Single suture craniosynostosis
- Apert
- Saethre-Chtzen
- Crouzon
- Pfeiffer / Cloverleaf
What can
Headlines Offer?
- Putting you in touch with other families,
where possible with a child with the same condition and of similar age.
- An
opportunity to have your concerns answered.
- The
latest information on surgical techniques, genetic research and all issues
affecting your child's future - from benefits to education.
- A
way for affected people to contact others of their own age.
- A
forum for opinions on all aspects of craniofacial conditions.
We
produce three newsletters a year and aim to have twice-yearly get togethers to
allow families to meet and swap news and views.
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