Wolfram Syndrome UK

Overview

Wolfram Syndrome UK (WSUK) is a UK-based charity dedicated to providing support and resources for individuals and families affected by Wolfram Syndrome, a rare genetic disorder. The organization was established in 2010 by Tracy Lynch and her husband following their daughter's diagnosis with the condition. At the time, there was a significant lack of awareness and support in the UK for families dealing with this condition[1][3].

Objectives and Activities

The charity's primary objectives include raising awareness of Wolfram Syndrome, supporting research into the condition, and offering support and advice to affected individuals, their families, carers, and healthcare professionals. WSUK works closely with clinics at hospitals, notably those in Birmingham, and organizes annual conferences for the community and medical professionals[1][4].

WSUK has grown significantly since its inception, expanding from connections with just five families to a network of about 80 people in the UK and many others globally. The organization has fostered strong relationships with supporters who contribute financially and through fundraising events, including an annual charity golf day[1][3].

Events and Awareness

In recent years, WSUK has developed a global awareness day to highlight Wolfram Syndrome and connect with other support groups worldwide. The pandemic prompted a shift to online events, allowing a broader, global audience to participate. WSUK continues to adapt its format, implementing a hybrid approach to engage both local and international communities[3].

Structure and Recognition

Wolfram Syndrome UK became a registered charity in June 2013, under the charity number 1152445[4]. The organization relies on fundraising to support its initiatives, including research funding and community support services[5].

[1] https://wolframsyndrome.co.uk [2] https://rarediseases.org/organizations/wolfram-syndrome-uk/ [3] https://www.rarebeacon.org/wolfram-syndrome-uk/ [4] https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/5034291/charity-overview [5] https://www.rnib.org.uk/sightline-directory/organisations/wolfram-syndrome-uk-b1b0a848-1e91-43ba-bd6b-20713adca592/