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.