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Unique - rare chromosome disorder support group

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 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 private Facebook groups for registered members. It publishes a magazine three times a year. Unique hosts occasional family events. Unique has over 24,000 affected members and many relevant professional members worldwide in over 100 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.

Who to contact

Contact Name
Beverly Searle
Contact Position
Chief Executive Officer
Telephone
01883 723356 (Helpline)
E-mail
info@rarechromo.org
Website
www.rarechromo.org
Notes

Unique COVID-19 Information: https://www.rarechromo.org/covid19update/

Facebook

Twitter: @Unique_charity

Instagram: unique_charity

Other Details

Costs

Table of costs
Table of costs
AmountCost Type
Free Free

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Record Last Updated On: 22/04/2021

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