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Unique - Understanding Chromosome Disorders

Last Update:4/5/2017
Contact:Beverly Searle PhD
Address:The Stables
Station Road West
Oxted, Surrey, RH8 9EE, UK
Phone:+44 (0)1883 723356
Toll Free:-
To inform, support, network with and alleviate the isolation of anyone affected by a rare chromosome disorder and the professionals working with them and to raise public awareness.
Program Description
International family support group. Unique is a source of information and support to families and individuals affected by any rare chromosome disorder and to the professionals who work with them.

Unique offers contact with families with an affected member who has the same rare chromosome disorder or who has similar symptoms or practical concerns, irrespective of specific chromosome disorder. It produces a comprehensive range of family-friendly, medically-verified information guides on a variety of rare chromosome disorders and rare single gene disorders associated with developmental delay/ID, free to download from Unique's website.

A network of local contacts promote awareness of rare chromosome disorders to the general public and professionals. Unique co-ordinates families to assist in research and has password-protected discussion forums for registered members, it also has social networking sites on facebook, twitter, etc.

It publishes a magazine three times a year.

Unique hosts occasional study and family conference weekends.

Unique has over 11000 affected families and many relevant professionals as members worldwide in 95 countries. Individually these chromosome disorders are rare but collectively they are common. It is believed that more than one in every 200 babies is born with a rare chromosome disorder, with more than one in every 1,000 babies having symptoms from birth or early childhood, the rest being affected when they grow up and try to have babies of their own.
Established in 1984, Unique is a UK-based charity (1110661) but welcomes members worldwide. Membership of Unique is free but the group receives no government funding and is heavily reliant on donations and fundraising to continue its work.
Developmental Delays/Disability
Family Support
Genetic Disorders
Grandparent Support
Learning Disabilities
On-line Community/Listserv/Social Media
Rare Disorders
Support Group
Counties Serviced
Entire State
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