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Rutland Information Service

Unique - Understanding Rare Chromosome and Gene Disorders

Discovering that you or your child has a rare chromosome disorder or an autosomal dominant single gene disorder causing your child's learning disability, developmental delay and maybe other symptoms can come as a great shock.

You might be feeling a mixture of emotions; sadness, confusion, numbness, anger, guilt, "why me?", isolation, bewilderment and very often a sense of grief for the child you had anticipated.

You might despair at the lack of information about your own or your child's disorder or that the disorder hasn't even got a 'proper' name.

Whatever your feelings and emotions, we know how much it can help to talk to people who understand what you are going through and who even know what you are talking about.

Who to contact

01883 723356

At Unique we run telephone and email helplines for new and existing member families and professionals. We can try to answer your questions about specific rare chromosome disorders and some autosomal dominant single gene disorders that are associated with intellectual disability/developmental delay/ medical issues/behavioural issues. Whatever your question, or if you just want to talk to someone, please do not hesitate to pick up the phone.

This page was last updated on: 13/11/2018

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