Bone marrow transplant may be considered for a small number of these diseases and continuing scientific research may lead to gene therapy and enzyme replacement therapy. This is available for most types of Mucopolysaccharidoses and related conditions. Usually the procedure can take place at ten to twelve weeks using chorionic villus sampling. Alternatively amniocentesis may be performed at 12-16 weeks. The Society is a National Registered Charity No. 287034 founded in 1982 by the parents of a child who had Hunter disease.
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We are a main source of information about rare disorders and are able to assist affected adults as well as children. The CaF Directory Online contains details of many medical conditions and also patient support groups. The information in it is also provided as part of the NHS Direct Online service. Although great care has been taken in the compilation and preparation of this work to ensure accuracy, Contact a Family cannot accept responsibility for any errors or omissions.