The History of the Genetic Alliance UK

Genetic Alliance UK was founded in 1989, however the origins our umbrella organisation began a few years prior to this. Please read on to find out more.

If you would like to read our comprehensive History of Genetic Alliance UK click on our HISTORY (PDF) link. An easy to use contents list at the front of this publication lets you skip to the sections you are interested in and there are also internet links within the text to relevant organisations.

Why was there a need for such an organisation?

Due to the large number of policy issues that were arising in the genetic field in the late 1980's, it became apparent that one voice was needed for all the people affected by genetic conditions.

Many support groups had been set up by volunteers in this period, and the network was fragmented allowing little space or time for interaction and the sharing of ideas and problems amongst fellow organisations. With one voice and point of contact, the individual patient organisations would be able to enhance their ability in communicating with each other, and with outside parties, for example government bodies, health organisations, and pharmaceutical companies, about the issues that they were facing.

Having an alliance would also enable the larger organisations to share their knowledge, and to be in contact with smaller support groups. It would enable a sharing of information, support, and help in bringing issues into the public foreground and raise public awareness of genetic disorders. By working together and sharing knowledge amongst the groups there were more possibilities in improving the research and development, treatment and general care of those affected by genetic disorders.

Who decided to set up Genetic Alliance UK?

The initiative to begin this organisation was taken by Shirley Dalby, who at the time was working for the Huntington's Disease Association.

How many charities were involved at the beginning?

Between 12 - 15 charities were contacted and attended a workshop to discuss the possibilities of setting up an umbrella organisation to be called the Genetic Interest Group (which later in 2010 changed its name to Genetic Alliance UK). The proposal was also shown to the British Society for Genetic Medicine in Oxford. They were very keen on such a group being formed and decided to back the founding of Genetic Alliance UK. The first umbrella group for all those affected by genetic conditions, Genetic Alliance UK, was born.

The early days

For the first four years Genetic Alliance UK was run on a voluntary basis by Ann Hunt of the Tuberous Sclerosis Association who volunteered her time, and space, to work from home alone initially and later with the help of a part time secretary who was "loaned" to Genetic Alliance UK through Christine Lavery who worked for Contact a Family at the time and is now Director of the Society for Mucopolysaccharide Diseases (MPS Society).

The Cystic Fibrosis Trust also kindly volunteered to print "Genetic Alliance UK Today" the newsletter, and a friend designed the first logo, which was used up until 2010, when it was felt we needed to re-brand the vastly expanded organisation that Genetic Alliance UK had become.

Directors and Staff

After four years Genetic Alliance UK gained a part time secretary  which was shortly followed by a grant which was gained in order to employ a Director of Genetic Alliance UK.  Alastair Kent, remains the Director of the Genetic Alliance UK today, and is now accompanied by a team of core full time staff and project officers in Genetic Alliance UK's head office in London as well as two regional development officers based in Wales and Scotland

Changing our name in 2010

From Genetic Interest Group to Genetic Alliance UK

Founded in 1989, the Genetic Interest Group had been working to support all those affected by genetic conditions for over two decades. In recent years we'd grown significantly to become involved in an increasingly diverse range of activities. In 2009, we asked a representative poll of those important to us, including members and potential members, whether our name accurately reflected our mission and the work that we carry out. Although many of our stakeholders felt that Genetic Interest Group was an extremely well-respected organisation, our work was not always well understood. We feel that our new name Genetic Alliance UK (and branding) provides a better insight into the voices we represent and the wide range of work we do.

Genetic Alliance UK now represents over 150 voluntary patient organisations and has representation on numerous bodies in the UK, Europe and the rest of the World.