Understanding Rare Chromosome and Gene Disorders

Our History

Unique has been supporting, informing and networking families and individuals affected by a rare chromosome disorder since it was founded by Edna Knight MBE in the UK in 1984 as the Trisomy 9 Support Group.

In 1993 the group was granted Charity Status and the logo Unique was adopted.

In 1996, Unique launched its comprehensive computerised database to collect information on how specific rare chromosome disorders affect the health, development and daily living of 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, Beverly Searle and a part-time Family Support Officer (Marion Mitchell). In April 1999, the group’s first website was launched and membership stood at just 1192 families. Beverly went on to lead the charity as Chief Executive Officer for many years, until her retirement in August 2021. Please click here to read more about Beverly as mum to Jenny who had a rare chromosome disorder and as the former CEO of Unique.

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 and education. A part-time Finance and Fundraising Officer joined us in 2004.

By 2018, group membership has risen steeply to over 16,500 families, representing over 18,500 individuals with a rare chromosome disorder or an autosomal dominant single gene disorder. We have members in over 100 countries worldwide. With about 130 to 150 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 are more readily available, like microarrays and DNA sequencing, many more previously undiagnosed people will be receiving a diagnosis of a rare chromosome disorder or an autosomal dominant single gene disorder. Consequently we expect our membership to continue to rise rapidly for the foreseeable future. Of necessity, our core staff team has had to grow to keep pace with the huge increase in our workload but still remains small. We are supported by hundreds of clinical and other professionals, including geneticists and paediatricians, freely volunteering their time, skills and expertise, for example to verify and translate our guides, to write the text for some of our single gene disorder leaflets and to act as a professional sounding board.

Over these many years, we have worked very hard to raise awareness of Unique among families and individuals affected by rare chromosome disorders or autosomal dominant single gene disorders. We have also been spreading awareness of rare chromosome disorders and autosomal dominant single gene disorders to professionals, to decision-makers and policy-makers 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.

Last edited by Craig Mitchell, 21st April 2022