Join our team!

Join our team!

Date: 23 Sep, 2021  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 come and join our award-winning charity, Alström Syndrome UK (ASUK) which provides information, support and advice for individuals, their families, carers and professionals.

Alström Syndrome (AS) is a very rare genetic condition which can cause progressive blindness and hearing loss. Most people with Alström Syndrome will have dual sensory 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 raise awareness, support pioneering research, and enable better treatments and monitoring through multi-disciplinary NHS clinics.

We have one position available as part of our highly commended family support service. This role will be responsible for supporting the coordination of the Alström multi-disciplinary clinics in Birmingham and linking with local healthcare professionals.  As well as offering dedicated personalised family support and developing and continually updating person centered plans.

Role               2-3 days per week (flexible)

Location       Based at home
This role will require frequent travel in Birmingham and the Midlands

Salary            £22,448-£25,448 (Full Time Equivalent)
Depending on experience and knowledge.

Closing date Monday 10th January 2022 by 9am

Interviews     18th/19th January 2022 (this may be a face to face or virtual interview, so please keep these dates free)

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 as a relative with lived experience. Ideally you will have some experience of working with people with dual sensory loss and be confident in talking with individuals who may have a range of differing abilities. You will recognise the importance of good support and continually look for ways to improve this vital family support service. You will have brilliant people and administration skills.

It will be a distinct advantage if you have personal experience or a connection to a rare and/or complex condition.

If you like a challenge, want to make a difference to people’s lives and feel passionate about the rights of families then we would be eager to hear from you.

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

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

If you experience any issues downloading the forms, please get in touch with Catherine Lewis, and she can send these to you via email.

Please send your completed application forms and equality monitoring forms to Catherine Lewis by email