Welcome to the Wolfram Syndrome UK Support Group Website
Welcome, you have found the site for Wolfram Syndrome UK; the only support group and website in the UK. This site was started in 2010 until then the only website associated with WS was a worldwide site. There was no easy to read information available and no real support, as many medical professionals had or still have never heard or come across the syndrome. It was felt the UK required a web site where families can talk and find information that may be useful.
WSUK became a registered charity in June 2013. Prior to that we had been raising funds for research had been raised via WellChild, the national charity for sick children, and our fundraising group ‘The Charity Roadtrip’. WSUK and WellChild still continue to work closely together.
Wolfram Syndrome UK (WSUK) is the national charity and support group to help fund research and provide support for those affected by the condition and their families. We feel the more people that know about WS the better and will make sure that hospitals, Doctors and health care professionals are aware of this site. We also aim to arrange an annual meeting for UK families and medical professionals alike, - This way we can all look out for each other...
This site was set up and is monitored by families affected by this rare genetic disorder and our aim is to raise as much awareness of this syndrome as we can.