About Wolfram Syndrome UK (WSUK)
WSUK is a small national charity based in West Sussex that supports children, young people and adults affected by Wolfram Syndrome (WS) and their parents/wider families. WS is an ultra-rare genetic disorder which causes a complex range of symptoms, including diabetes mellitus, vision problems, renal problems, deafness, and neurological problems. WSUK provides current, accurate and family-friendly information, raises awareness of WS among health professionals and the public, and helps to fund WS research. For further information about the charity visit:
WSUK about the adult support worker role
WSUK is seeking a part-time adult support worker (two days, per week 0.4 FTE, £9k-£11k per annum). This home-based role will provide support to WS affected adults and their families to help improve the quality of their lives. Through liaising with professionals, external or advocacy organisations, this role will help facilitate access to the services to which WS affected adults and their families are entitled. The support worker will help adults and their families to increase their confidence and independence in living with their condition. This role will also act as an important point of contact for WS affected adults, providing advice and support in confidence. As this is a new role, there is opportunity for the successful candidate to develop the role to best meet the on-going needs of WS affected adults and their families.
Skills and experience
Applicants should have several years’ experience in a similar position, working with people affected by sensory loss, long-term medical/genetic condition, or disability. Applicants should also have a strong desire to improve the lives of people living with a long-term condition or disability and be confident in talking with people with a range of abilities and diverse cultural backgrounds.
Applicants should have experience in homeworking and be confident in working independently on their own initiative and in managing conflicting priorities.
Some limited UK travel will be required (particularly to attend adult NHS WS multidisciplinary clinics in Birmingham, and the annual WS conference). Participation in regular trustee meetings via zoom (evenings) will also be expected. A DBS check will be required.
To apply, please email/ send your cv to email@example.com by July 2nd, 2021
Rare Revolution Editor