The Encephalitis Society was founded in 1994 by a group of parents whose children had been affected by the condition. They found that information about encephalitis and support for people affected and their families was virtually non-existent.

The beginning

In the early days, the information we provided was a simple leaflet while the newsletters were primitive. Support was by telephone with occasional meetings across the UK, including the first Family Weekend. A web site was established and a parent pack produced with information written by professionals, some of whom are still with us on our Scientific Advisory Panel.

Growing Up

We moved from a bedroom to a small unit in Malton. There was a big jump in the quality and quantity of our information material and the jigsaw logo was adopted. Our Scientific Advisory Panel expanded and the first Encephalitis Conference was held. We changed our name to the Encephalitis Society and celebrated the first 10 years with tea at the House of Commons.

Our web site is hailed as the most comprehensive source of information on encephalitis anywhere. An independent evaluation of our Support service hailed it as "A Light in a Very Dark Place". We deliver tailor-made training programmes to professionals.

The Future

We aim to expand our support service to reach more people. To give a more personal service we will train and accredit volunteers to be representatives of the Society in their local areas.

Online, Forums and social networking will bring together people in mutual support. E-learning opportunities are envisaged with accredited schemes at levels from Foundation to Professional.

Further strides will be made into research with closer collaboration among our expanding forum of researchers. Our dream is to have a Respite / Assessment Centre which would be a haven for recovery and a centre of excellence. We are also mindful that as devastating as Encephalitis can be for people in the western world, its impact on people in developing countries is far greater.