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Unique Rare Chromosome and Gene Disorder Support Group

Photograph taken by Liam Hayat

Unique Rare Chromosome and Gene Disorder Support Group

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Unique is a source of information and support to families and individuals affected by any rare chromosome or newly discovered 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 - 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 or gene disorder or, who has similar symptoms or practical concerns, irrespective of specific chromosome or gene disorder. It produces a comprehensive range of family-friendly, medically-verified information guides on a variety of rare chromosome and gene disorders. 

Unique co-ordinates families to assist in research and has private Facebook groups for registered members. It publishes a magazine three times a year. Unique hosts occasional family days in the UK when funding permits.

Unique has over 28,000 affected members and many relevant professional members worldwide in more than 120 countries. A network of local contacts worldwide promote awareness of chromosome disorders and Unique to the general public and professionals.

Contact Details

Organiser

Sarah Wynn

Job Title/Position

Chief Executive Officer

Telephone Number

01883 723356 (Helpline)

Email Address

info@rarechromo.org

Location

Service Information

Coverages:

National

Last updated 9th February 2023

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