Osteopetrosis Support Trust

C/O 26 Doniford Road
Williton
Taunton
Somerset
TA4 4SE

Tel: 01984 639 416
Web: www.osteopetrosis.co.uk

The aim of the trust is to offer advice and support to families of children with malignant infantile osteopetrosis. They may be able to get information on other types of osteopetrosis.

Malignant infantile osteopetrosis is the commonest of the severe forms of infantile osteopetrosis and is probably caused by faults in a number of different genes since no single gene localisation (locus) can be identified. Most children develop severe nerve damage early in life and two thirds of affected children die by the age of six years without treatment. Currently the only curative treatment is bone marrow transplantation. This can completely prevent further progression of the disease.

The aims of the trust are:

• To provide support, advice and information via telephone, letter, email and to put families in touch with each other, where possible.
• The promotion of research into the causes and treatments of osteopetrosis.
• The collation and distribution of information relating to the disease.

Grants are also available to help to enhance the quality of the children's lives. Also bereavement grants. However this is only available to UK families and applications have to be completed.