Welcome, you have found the site for Wolfram Syndrome UK (WSUK); the only charity and website in the UK for this condition. We started in 2010, as 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 website where families could find information and support that might be helpful to them.
WSUK became a registered charity in June 2013. We work closely with the WS Families Co-ordinator at WellChild, the national charity for sick children, as WellChild support the children’s WS clinics in Birmingham and co-fund with us for our annual conference for those affected, their families, support teams, medical professionals and researchers.
WSUK as a national charity 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 endeavour to make sure that hospitals, Doctors and other health care professionals are aware of this site.
Penfold Verrall are a Sussex based company owned by the brother of one of the co-founders of WSUK. They have been involved with WSUK from the beginning and started fundraising for us in 2013 by holding an annual Charity Golf Day. Penfold Verrall support us as well with funding towards our annual Families Conference