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Top job
Bardet-Biedl Syndrome UK (BBS UK), Remote
£28,000 - £32,000 per year (full time equivalent)
Seeking a compassionate individual to support children and families living with a rare condition
Posted today
Top job
Youth Futures Foundation, England (Hybrid)
£35,140 - £41,110 per year
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Posted 2 days ago
Closing in 3 days
The Ripple Pond, Remote
£27,251.95 pro rata
Be part of an exciting team, making a real difference in our military communities.
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S.A.L.V.E. International, Remote
£40,000 - £45,000 per year
Posted 6 days ago Apply Now
Closing in 7 days
The King's Trust, Birmingham (Hybrid)
£29,290.00 to £36,612.00, dependent on your skills, knowledge and experience
Posted 5 days ago
Closing in 4 days
Social Investment Business, Remote
£68,000 per year
An excellent opportunity to lead a team and drive our impact, investments and disbursement of grant funding
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Lymphoma Action, Remote
Circa £30,000 per annum (pro-rata: £17,142 for 20 hours per week)
Posted today
Page 1 of 4
Remote
£28,000 - £32,000 per year (full time equivalent)
Part-time (20 hours per week)
Permanent

Actively Interviewing

This organisation is scheduling interviews as applications come in. They're ready to hire as soon as they find the right person. Don't miss your opportunity, apply now!

Job description

Join BBS UK and help deliver compassionate support within NHS highly specialised clinics, supporting children and families living with Bardet-Biedl syndrome.

At Bardet-Biedl Syndrome UK (BBS UK), we are dedicated to improving the lives of those affected by this rare genetic condition. Our charity provides specialist support services that help children, young people and families feel informed, supported and able to navigate complex health and care systems, working in partnership with NHS Highly Specialised BBS Clinics.

We are seeking a compassionate and organised individual to join our Clinics Support Team as a Patient Liaison Officer (PLO). This role offers a unique opportunity to deliver charity-led support within specialist paediatric clinics at Great Ormond Street Hospital, working alongside NHS multi-disciplinary teams while remaining part of a close-knit and supportive charity team.

About the Role

As a Patient Liaison Officer, you will play a vital role in ensuring families feel prepared, supported and heard before, during and after their clinic appointments. You will provide emotional and practical support, advocacy and system navigation, helping families to understand their care and access appropriate support, while referring more complex casework to BBS UK’s specialist Advice Service.

You will:

  • Support families before, during and after NHS Highly Specialised BBS clinic appointments

  • Facilitate clinic attendance by preparing families for appointments, addressing concerns and helping to reduce “Did Not Attend” rates

  • Attend specialist BBS clinics at Great Ormond Street Hospital, and St Thomas' Hospital, providing on-the-day support to families and clinicians (Approximately 2-4 days per month)

  • Act as a key point of contact between families and clinical teams, supporting communication and information-sharing

  • Provide light-touch advocacy, information and signposting in relation to health, education, social care and local authority support

  • Identify unmet needs or emerging issues during clinic interactions and refer families to the BBS UK Advice Service for specialist advocacy and follow-up

  • Support families during key transition points, particularly the move from paediatric to adult services

  • Maintain accurate and confidential records using BBS UK’s CRM system (CharityLog)

  • Contribute to service evaluation, quality improvement and the wider work of BBS UK

This is a home-based role with attendance at clinics in central London and occasional travel to other clinic sites and BBS UK events. Travel expenses will be reimbursed in line with BBS UK policies.

Who We’re Looking For

We are looking for an experienced individual with a background in supporting children and families, who can work confidently in a clinic-based, people-facing role.

Essential Experience & Skills

  • Experience working with children, young people and families, ideally within health, social care, education or the voluntary sector

  • Strong communication skills, with the ability to engage sensitively with families experiencing distress or uncertainty

  • Experience providing emotional and practical support to individuals with complex or long-term conditions

  • Ability to organise and manage multiple tasks, prioritise effectively and work independently

  • Good IT skills, including Microsoft Office and case management/CRM systems (e.g. CharityLog)

  • Understanding of safeguarding principles and professional boundaries

  • A strong commitment to improving outcomes for people living with rare or complex conditions

Desirable Experience & Skills

  • Knowledge of Bardet-Biedl Syndrome or other rare or genetic conditions

  • Experience working alongside or within NHS services or multi-disciplinary teams

  • Understanding of education, health and social care systems in England

  • Experience supporting families affected by disability or visual impairment

  • Ability to travel for work, including clinic attendance (travel expenses reimbursed)

Why Join BBS UK?

BBS UK is a small, dedicated charity making a meaningful difference to the lives of children, young people and families affected by Bardet-Biedl Syndrome. Our Clinics Support Team is widely recognised by families and clinicians as an essential part of the specialist BBS service.

By joining us, you will:

  • Have a direct and positive impact on families at critical points in their care journey

  • Be part of a supportive, values-driven charity team

  • Work flexibly from home while delivering face-to-face support in specialist clinics

  • Receive training, supervision and ongoing professional development

  • Contribute to a nationally recognised rare disease support service

Additional Information

  • DBS Check: An enhanced DBS check is required for this role

  • Safeguarding: Completion of safeguarding training within the first month of employment

  • Flexible Working: Occasional evening or weekend work may be required, with time off in lieu provided

  • Hours: This is a permanent, part-time role (20 hours per week)

How to Apply

If you’re passionate about supporting children and families living with a rare condition and would like to be part of a dedicated charity team, we’d love to hear from you.

If you would like to discuss the role before applying, details can be found in the application pack.

Application Deadline: 8th February 2026

Application resources
Posted by
Bardet-Biedl Syndrome UK (BBS UK) View profile Organisation type Registered Charity Company size 6 - 10

We support and empower our community, champion wellbeing, and raise awareness, ensuring understanding, support, and hope for all affected.

IMG_4404.JPGClinics (1) (1).jpg
Posted on: 12 January 2026
Closing date: 08 February 2026 at 15:16
Tags: Advocacy, Blind, Health / Medical

The client requests no contact from agencies or media sales.