Wolfram Syndrome UK

Who we are

Wolfram Syndrome UK is a patient orientated organisation; who take pride in helping to offer high quality support services, facilitating access to the WS specialist clinics operated by NHS England. During these clinics those affected and their families can be seen by medical experts to help maintain a good quality of life and receive the most up to date treatments and advice, which is then shared back to a patient’s local care team.

At the very heart of our charity’s soul is a driving force, a passion and vision to improve the lives of those with Wolfram Syndrome.

Our Vision Objectives

• Every person affected by WS and their families should receive high quality support services where possible
• Every person affected by WS can access the WS specialist medical clinics
• WSUK will endeavour to raise awareness of this ultra-rare condition, in the hope of enabling early diagnosis
• WSUK will raise funds to promote research, further our support services and offer opportunities for those affected
• WSUK will promote research to aid better understanding of this complex condition which may lead to better treatments and hope for the future
• WSUK will endeavour to provide peer to peer mentoring, connections with ‘local’ families and a helpful voice when it is needed.
• WSUK will provide an annual conference for those affected, their families, medical professionals and support teams to receive information from the UK and around the world
• WSUK will endeavour to provide funding for fun/social activities for families and individuals. Living without limits!