We are the only charity and support group in the UK for individuals and families affected by Wolfram Syndrome. We have an informative website which is kept up to date, we send out quarterly e-newsletters, put on an annual conference for our members, medical professionals and anyone else interested in Wolfram Syndrome.
Some of the funds we raise go to help towards research for a treatment but ultimately a cure and supporting those currently taking part in the UK clinical drug trial with help towards travel and accommodation costs. We raise funds for other charitable activities as well.
We have an ongoing goal of educating and raising awareness about Wolfram Syndrome amongst those in the medical profession, whether practicing for many years or currently in training.
We are a small community spread out around the UK with currently about 85 people diagnosed with WS.