Unique - Understanding Chromosome and Gene Disorders
Organisation type: Voluntary or Community Sector
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. 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 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 14,000 affected families and many relevant professionals as members worldwide in over 100 countries. A network of local contacts worldwide promote awareness of 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.