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Rare Chromosome Disorder Support Group

Registered charity number 1110661

On JustGiving since Mar 2005

About the charity

Unique provides information and support to individuals affected by rare chromosome disorders, their families and the medical and other professionals working with them. Rare chromosome disorders are lifelong conditions, often causing severe physical and learning disabilities and complex health issues. They affect at least 1 in 200 live-born babies. Most will be dependent on their carers for the duration of their lives, many unable to walk, feed themselves or communicate their needs. The disorders remain very poorly understood and Unique is a place for parents and carers to turn to for help and advice. We help them come to terms with their child’s diagnosis by providing information on hundreds of specific disorders, sensitive support through our Listening Ear service and by linking them with other families living with similar disorders. We also work to raise awareness and disseminate information among the medical and many other professionals involved, aiming to ensure those affected receive the care and support they need in their own communities.

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