Adult Support Co-Ordinator

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 visit the Wolfram Syndrome UK website 

WSUK Adult Support Co-ordinator Role

WSUK is seeking a part-time adult support co-ordinator (2.5 days per week, working over 4-5 days, 0.5 FTE, £14.1k-£15.6k per annum), based in the Midlands area. 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 (including the WS expert clinical team at Queen Elizabeth Hospital (QEH), Birmingham), external or advocacy organisations, this role will help facilitate access to the services to which WS affected adults and their families are entitled. The adult support co-ordinator 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.

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 help improve the lives of adults 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 working effectively as part of a remote team, be confident in working independently and in managing conflicting priorities.

Some limited UK travel will be required (particularly to meet WS affected adults during their WS clinic visit at QEH, Birmingham (6 clinics per year) and the annual WS conference. An enhanced DBS check will be required.