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Unique – rare chromosome and gene disorders

Unique is a source of information and support to families and individuals affected by any rare chromosome or gene disorder and to the professionals who work with them. 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.

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.  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 16,500 affected families and many relevant professionals as members worldwide in 100+ countries.  A network of local contacts worldwide promote awareness of rare chromosome disorders and Unique to the general public and professionals.

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.

Who to contact

Contact Name
Beverly Searle
Contact Position
CEO
Telephone
E-mail
info@rarechromo.org
Website
www.rarechromo.org

Where to go

Name
The Stables
Address
Station Road West
Oxted
Surrey
Postcode
RH8 9EE