Behavioural and personality characteristics reported to be associated with galactosaemia include lack of confidence and assertiveness, anxiety, social withdrawal and timidity. These can lead to difficulty in obtaining independent employment. Yet some affected adults are reported to cope well with work, marriage and parenthood. The Group is a National Registered Charity No. 1020167 started during 1988 by a mother with an affected son. The group represents the families of over 90 affected children.
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Contact a Family is a UK charity which helps families who care for children with any disability or special need. 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.