Unique Information Project
Oxted, UK
Children born with Rare Chromosome Disorders are often sick and severely disabled, unable to walk, talk or communicate their needs and completely reliant on their parents and carers. The issues they face are compounded when doctors have few answers to the many questions their parents have, questions like ‘will she ever walk?’, ‘will she talk?’ and ‘will he get better?’ We at Unique support them to help them overcome their feelings of desperate isolation and face the future with hope. To help us meet rapidly growing demand from families desperate for information and answers to their questions, our ‘Unique Information Project produces invaluable resources which help to improve the care of hundreds of disabled children. We aim to produce 10 new guides in the next year, part of an invaluable resource for thousands of families now and well into the future. Topics covered will include conditions associated with severe learning disability, global developmental delay, brain and heart anomalies. As there is so little published information for these families, written in accessible, easy to understand language, these guides are world leading. As well as helping parents understand and come to terms with their child's condition, they also act as a tool for raising awareness among and educating medical and other professionals caring for those affected.
What we've received

