Our History

Unique has been a source of mutual support and self-help to families of children with a rare chromosome disorder since it was founded by Edna Knight in the UK in 1984 as the Trisomy 9 Support Group.

In 1989, with the support of the In Touch Trust and Contact a Family, the group expanded to include families whose children have any rare chromosome disorder. In 1993 the group was granted Charity Status and the new logo Unique was adopted.

In 1996, Unique launched its comprehensive computerised database to collect information about all aspects of how specific rare chromosome disorders affect individual members over a lifetime. In January 1999, Unique was awarded a 3 year grant by the National Lottery Charities Board to fund a full-time Development Officer and a part-time Family Support Officer. In April 1999, the group's first website was launched and membership stood at just 1192 families.

In 2003, other short-term grants allowed the group to employ a full-time Information Officer to research and produce family-friendly information leaflets on specific rare chromosome disorders. At the same time, a part-time Assistant Information Officer was employed to produce information on topics such as behaviour, communication, education and so on. A part-time Finance and Fundraising Officer joined us in 2004.

Over these many years, we have worked hard to raise awareness of Unique among families and individuals affected by rare chromosome disorders and the professionals who work with them. We have also been spreading awareness of rare chromosome disorders to professionals and to the general public so that they too have an appreciation of the extraordinary challenges our members face. With nearly 5000 member families in 67 countries in March 2006, the demand for Unique's work shows no signs of abating! However, securing grants to pay for this work is becoming much more difficult with fewer funding opportunities available and many more charities competing for the same grants. Please help us with donations and fundraising so that we can continue our essential work