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How your information can help

When families first receive a diagnosis of a chromosome disorder, their initial reaction is almost always to search for information about what this will mean for their child over his or her lifetime. Very often though, the disorder is so rare that there is little or no information. There are no books or articles to turn to and very often even their doctor had no information to give them. This is why it is so important that as many families as possible register as Unique members and provide information about their child’s symptoms and how it has affected their lives and their family’s life. Even if you become a member and do not want your name and contact details given out to other registered families, with your permission we can still use your information in anonymised form to help others – e.g. as summaries of symptoms to help clinical geneticists and genetic counsellors working with newly diagnosed families in clinic or to contribute to our ground-breaking series of family-friendly, professionally-verified information guides on specific rare chromosome disorders.

Maybe you have been a member for a long time and have passed the stage of needing lots of support from us – even if you no longer need our support yourselves, the information you can provide is especially helpful to others in the earlier stages of their journey, so please stay registered and add to the knowledge.

Thank you for help – without you we would not be able to provide the information and support to Unique families like yours! Don’t let us go back to the situation before Unique was launched in 1984 when families had to cope alone with a complete lack of information.