Join our team!

Join our team!

Date: 23 Mar, 2023  No Comments

We are on the hunt for a Alström Syndrome Care Coordinator


Do you relish the challenge of making a positive impact on people’s lives, supporting individuals with a rare condition and those who love and care for them?

If you do, then why not apply to join the team at Alström Syndrome UK (ASUK) where we provide information, support and advice for individuals, families, carers and service providers.

Alström Syndrome (AS) is a very rare and complex genetic condition which can cause progressive blindness and hearing loss. It can also lead to heart and kidney failure, type 2 diabetes, liver dysfunction and associated problems. The symptoms arise at different stages making diagnosis and treatment difficult.

ASUK raises awareness, supports pioneering research, and helps to coordinate NHS highly specialised multi-disciplinary clinics.

We have one position available as part of our highly commended family support service. Responsibilities include supporting the coordination of the Alström Syndrome multi-disciplinary clinics in Birmingham and linking with local health, education and social care providers.  Also offering dedicated personalised family support and developing and continually updating person centered plans.

Role               3 days per week (specific days to be discussed)

Location       Based at home
This role will require frequent travel to Birmingham.

Salary £25,233 – £28,605 (FTE)
Actual salary for 0.6 role is £15,140 – £17,163 (depending on knowledge and experience).

Closing date 12pm on Friday 5th May 2023

Interviews     15th & 16th May 2023

It is hoped that interviews will be in person, however they may take place virtually.


About you
You will have experience in a similar role where you will have learnt the importance of supporting individuals and families according to their needs, whether that is professionally, as a volunteer or through your own lived experience. We are looking for someone who wants to make a difference. Experience of delivering family support and an ability to work flexibly and travel, when necessary, will be essential. Knowledge and experience of dual sensory loss and working with people from diverse and marginalised communities will be an advantage, as will experience of working in a hospital or other healthcare setting.

Most importantly, if you are compassionate and determined and want to make a positive impact on people’s lives, we urge you to apply.

Recruitment pack for Alström Syndrome Care Coordinator (Highly Specialised Service)

  1. Welcome Letter
  2. Job Description
  3. Person Specification
  4. Application Form
  5. Diversity Monitoring Form

If you experience any issues downloading the forms or would like any further information, please contact Kerry Leeson-Beevers via email  or telephone 07716135940.

Please send your completed Application Form and Diversity Monitoring Form to Catherine Lewis by email