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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 MBE 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 guides 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.

By early 2013, group membership had risen steeply to over10,000 families, representing over 14,000 individuals with a rare chromosome disorder in over 90 countries worldwide. With at least 100 new families now joining us each month, the rate of growth of our membership shows no signs of slowing down! As more sophisticated methods of analysing people’s chromosomes and DNA, like microarrays and next generation sequencing, many more previously undiagnosed people will be receiving a diagnosis of a rare genetic or genomic disorder. Consequently we expect our membership to continue to rise rapidly for the foreseeable future. Of necessity, our team has had to grow to keep pace with the huge increase in our workload.

Over these many years, we have worked very hard to raise awareness of Unique among families and individuals affected by rare chromosome disorders. 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. 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.