Join our team!

Join our team!

Date: 28 Jun, 2024  No Comments

We are on the hunt for a Patient and Public Involvement and Engagement (PPIE) Coordinator


Thank you for your interest in the PPIE Coordinator role at Alström Syndrome UK and Breaking Down Barriers.

This exciting new role reflects our ambition to further develop the support we offer to individuals and families living with rare and genetic conditions, patient organisations, support groups and community networks.

If you understand the importance of including diverse voices and experiences in research and service developments, then we want to hear from you. Learning from people with lived experiences and addressing health inequalities is central to our work.

Knowledge of the barriers experienced by people from diverse, marginalised and underserved communities, previous experience of supporting people living with rare/genetic conditions and developing and facilitating PPIE groups will be a distinctive advantage. A willingness to work flexibly from home and to travel will be essential.

Most importantly, if you can demonstrate cultural humility, are compassionate and determined and want to make a positive impact on people’s lives we would encourage you to apply.

Location: Home based
Salary: £26,242 – £29,749 (pro rata) depending on experience (actual salary for a 3 day per week post is £15,746 – £17,850)
Term: 3 days per week with some flexibility around working days. The post is for an initial 2 years with the possibility of extension dependent on project funding.
There is a 3-month probationary period.

Closing date 12:00 noon Wednesday 24th July 2024

Interviews Week commencing 12th August 2024

The interviews will take place virtually.

Purpose of the role

This role is a pivotal part of our work in research and service development, both within ASUK and the wider BDB Network.

The role will include:

  1. Involving people with lived experience to further develop the work of ASUK and BDB
  2. Supporting the BDB Experts by Experience Advisory Group
  3. Supporting the BDB Network with PPIE initiatives
  4. Coordinating PPIE activities for various research projects within the rare and genetic community

If you have a passion for supporting organisations who want to make a positive difference to the lives of families living with genetic conditions, then we would like to hear from you.

We would expect you to have excellent communication skills and the ability to work with individuals and collaboratively with organisations and other stakeholders.

Recruitment pack:

1. Welcome Letter PPIE – June 2024

2. Job Description PPIE – June 2024

3. Person Specification PPIE – June 2024

4. ASUK Application Form Application Form

5. ASUK Diversity Monitoring Form

If you experience any issues downloading the forms please contact Catherine Lewis by email or if you would like to discuss the role further 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

Closing date 12:00 noon Wednesday 24th July 2024