Aims:
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.
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.
Address
c/o 26 Doniford Road
Williton
Taunton
Somerset
TA4 4SE