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Help Change the Future of Polycystic Kidney Disease Research
Patient & Public Involvement and Engagement (PPIE) Manager
PKD Charity
Remote (UK-based) | Part-time (22.5 hours / 3 days per week)
Salary: £33,000–£35,000 FTE pro rata (£19,800–£21,000 actual)
The PKD Charity is looking for an exceptional communicator and relationship-builder to lead patient involvement in groundbreaking PKD research.
This is not a standard engagement role.
You will help ensure that the voices, experiences and priorities of people living with polycystic kidney disease directly influence research, clinical studies and future healthcare decisions across the UK.
PKD affects around 70,000 people in the UK. It causes kidney failure, lifelong health complications and reduced life expectancy. There is currently no cure.
We believe research is stronger when patients are genuinely heard — not consulted as an afterthought.
That’s where you come in.
The Opportunity
As our Patient & Public Involvement and Engagement (PPIE) Manager, you’ll lead and shape involvement activity through the PKD Research Hub, working alongside patients, researchers, clinicians and partners to make research more inclusive, meaningful and impactful.
You’ll:
- Lead and support our Patient Involvement Panel
- Facilitate high-quality patient engagement and focus groups
- Work directly with researchers and industry partners
- Champion authentic lived experience in research decision-making
- Support awareness of clinical studies and research opportunities
- Create compelling patient stories and engagement content
- Help influence the future direction of PKD research in the UK
We’re Looking For Someone Who:
- Understands the power of meaningful patient involvement
- Can confidently manage relationships with patients, researchers and stakeholders
- Has experience in PPIE, health research, healthcare or the charity sector
- Is an excellent facilitator and communicator
- Brings empathy, professionalism and initiative
- Wants to make a tangible difference every single day
Experience in rare disease, kidney health or long-term conditions is welcomed but not essential.
Why Join Us?
At the PKD Charity, you’ll join a passionate national charity working to improve lives through:
- Research
- Advocacy
- Support
- Education
- Patient voice
This is a rare opportunity to shape a growing area of work with real national impact — while working flexibly as part of a supportive, mission-driven team.
What We Offer
✔ Fully remote working
✔ Flexible part-time hours (3 days / 22.5 hrs)
✔ 25 days annual leave pro rata + bank holidays
✔ Pension scheme
✔ Meaningful, purpose-driven work
✔ Opportunity to influence national research activity
Apply Now
For details on how to apply, please see the application pack.
Deadline 9am Monday 1st June. Interviews will provisionally be held online on Wednesday 10th June. However we will monitor applications on a rolling basis and may approach for interview at an earlier date. If we find the right candidate we may close the recruitment campaign at an earlier time, so we encourage you to get your applications in at the earliest opportunity.
Registered Charity 
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The client requests no contact from agencies or media sales.
Thank you!
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This role will support the development and delivery of our services and resources for young people born with a cleft lip and/or palate. Working closely with the Engagement & Services team to help us achieve our mission.
The Youth Engagement Coordinator will sit within the Engagement & Services Team. They will join a friendly and supportive team of seven colleagues who, together, are responsible for the delivery of CLAPA’s adult, family, children and young people and involvement services. The post holder will develop and deliver services for eight- to seventeen-year-olds, which will enable the young cleft community to connect, share experiences and access guidance and emotional support. Shaping what support looks like, creating positive impact and strengthening reach, this new role for CLAPA will make a real difference to the lives of children and young people born with a cleft.
If you think you have the talent, passion and experience to help us ensure we can always meet the needs of the community we serve, we want to hear from you.
The client requests no contact from agencies or media sales.