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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.
The client requests no contact from agencies or media sales.
Thank you!
What does it take to lead the national voice for special schools at a time of real change?
Chief Executive Officer (CEO) – National Association of Special Schools (NASS)
National – home-based, with regular travel across England and Wales, particularly London
£90,000–£110,000 per annum
Full-time, permanent.
About NASS
The National Association of Special Schools (NASS) is the membership association for special schools in England and Wales. We bring together independent special schools, non-maintained special schools, special academies, maintained special schools and multi-academy trusts with specialist provision.
We exist to inform, support and represent our members, helping specialist schools improve outcomes for children and young people with SEND and secure the place of specialist provision within the wider education system. NASS is known for being accessible, responsive and personal, combining national influence with practical support that members value as timely, human and trustworthy.
This is a pivotal moment for the organisation. In February this year, the Department for Education published a major white paper on SEND reform which will require NASS to both influence national policy on behalf of our members and children and young people, as well as support them to navigate the changes. Our new CEO will need to review our strategy while building on our strong platform and momentum to further deepen our influence and strengthen our internal capacity.
As our next Chief Executive, you will:
- Strategy & Impact: Lead NASS through a period of policy and structural change, ensuring the organisation remains clear on purpose, responsive to members and influential in the SEND landscape.
- Governance & Finance: Work closely with the Board of Trustees to provide strong governance, prudent financial stewardship, robust risk management and clear strategic oversight.
- Operational Leadership: Provide confident leadership to a small, remote team, strengthening collaboration, accountability, resilience and a positive, high-trust culture.
- Income Generation: Oversee budgeting, planning and reporting while developing thoughtful opportunities to diversify income through membership, partnerships, events and related activity.
- Community & Partnerships: Build and sustain trusted relationships with government, parliament, regulators, sector bodies and member schools, ensuring NASS remains relevant and well connected.
- Member Services: Protect and enhance the practical offer to members, from briefings and special interest groups to conferences, webinars, training and peer-to-peer learning.
- Brand & Profile: Act as a credible public ambassador for NASS, helping to modernise communications and broaden the organisation’s voice beyond a founder-shaped model.
- Future Growth: Shape a distributed leadership profile and support a more varied, accessible and engaging approach to membership, advocacy and communications.
- A seasoned senior leader with experience in a charity, membership body, education or public sector setting, and a clear track record of leading through change.
- A strong strategic thinker, able to absorb complex information quickly and translate it into clear, practical direction.
- A confident communicator with the gravitas to represent NASS with members, staff, trustees, MPs, peers, media and national partners.
- A politically astute relationship-builder, comfortable navigating a complex and fast-moving external environment.
- Experienced in governance, with a sound understanding of working with boards or trustees and supporting effective decision-making.
- Numerate and commercially minded, with experience of budgets, financial planning, income generation or partnership development.
- Credible, approachable and resilient, with the emotional intelligence to lead well in a high-profile, remote and sometimes uncertain context.
- Direct SEND experience would be a significant advantage, alongside understanding of specialist education or similarly complex stakeholder environments.
Why NASS?
- This is a chance to lead a respected, member-led organisation with a strong national reputation and a clear public purpose.
- You will help shape the future of specialist education at a time when SEND reform is high on the agenda.
- NASS has a loyal, experienced and collegiate remote staff team, supported by an active Board of Trustees.
- The organisation offers a genuinely influential platform, with strong connections across the sector and with government.
Application
For full details of the role including how to apply, please download the full appointment brief. For an informal and confidential conversation about this position, please contact Jenny Hills at Harris Hill via apply button with times to speak and (optional but appreciated) a CV or professional profile which will be treated with the strictest confidence.
Closing date for applications: 9am, Monday 8th June 2026
As leading charity recruitment specialists and a certified B Corp, Harris Hill is committed to high and ever-improving standards of equitable and inclusive recruitment. We actively welcome applications from all sections of the community regardless of age, disability, gender, race, religion, sexuality and other protected characteristics.
Thank you!
Using Anonymous Recruitment
This organisation is using Anonymous Recruitment to reduce bias in the first stages of the hiring process. Submit your application as normal and our system will anonymise it for you. Your personal information will be hidden until the recruiter contacts you.
Location: Home based- Please note that while the role is primarily remote, candidates must be based in the UK due to periodic travel requirements, including attendance at conferences and other in-person meetings.
Hours: Part time - 18 hours
Terms: One-year fixed term contract (with a possibility of extending the role funding allowing)
Salary: FTE £24,750 (actual £11,880)
Pension: NEST Scheme
Annual Leave: 28 days pro rata (inclusive of bank holidays)
Normal working week: 37.5 hours
What we can offer you:
• Flexible, remote working from home.
• A positive and friendly staff culture.
• Annual in-person meet-ups as a team.
• Laptop and Phone as required.
• Option to discuss and set your own regular working hours.
• The opportunity to make a difference to a growing charity and a large, engaged
community.
• Organisation wide shut down at Christmas in addition to your holiday entitlement
ABOUT US
PANS and PANDAS are complex neuro-psychiatric conditions which are frequently
misunderstood and misdiagnosed. PANS PANDAS UK are the only charity in the UK
working to improve outcomes and ensure brighter futures for people affected by PANS and PANDAS.
We provide support and information to families, and work tirelessly to inform medical
practice, raise awareness, engage with medical, social work and educational
professionals, and much more.
We are a small team based at home in various UK locations. We keep in touch frequently online and have a warm, supportive and positive culture.
OVERALL PURPOSE
The Education Training Development Manager will lead the operational development, and delivery of the national education training programme, ensuring it aligns with organisational priorities and emerging national guidance. The role is responsible for the coordination, growth and quality assurance of PANS PANDAS UK’s national CPD training offer for teachers and educational psychologists (EPs), supporting the development and delivery of high‑quality training modules and strengthening partnerships.
The role reports to and works in close collaboration with the PANS PANDAS UK Education Lead, who retains overall ownership, strategic responsibility and final decision‑making authority for the training programme and the wider education strategy.
Central to this role is working collaboratively with the PANS and PANDAS community and the Youth Advisory Board (YAB) to ensure all training is informed by lived experience.
Key Responsibilities
Programme & Content Development
- Jointly review, update and refine existing CPD materials with the Education Lead, informed by national guidance and emerging research, with the Education Lead holding overall responsibility
- Support development of new training modules and associated materials.
- Explore future delivery models to expand national reach and scalability.
- Identify opportunities for integration of PANS or PANDAS training/materials within University/Initial Teacher Training (ITT) and other relevant programmes.
- Work collaboratively with the PANS PANDAS community and Youth Advisory Board (YAB) to ensure training reflects lived experience.
Trainer Recruitment & Capacity Building
- Recruit and induct additional trainers.
- Support trainer development.
- Maintain consistent quality standards.
- Deliver priority or pilot training sessions when needed to help support programme growth and maintain delivery capacity.
Strategic Programme Oversight
- Provide leadership and direction for the development and delivery of the national education training programme within the strategic framework set by the Education Lead.
- Ensure training content and delivery models align with organisational priorities and upcoming national guidance.
- Lead long-term programme planning, sustainability and continuous improvement.
Partnership Development & Sector Engagement
- Build relationships with MATs, LAs, Universities and other national relevant organisations.
- Work with the charity Communications and Engagement Officer to promote the training models across social media and education networks.
- Attend and present at education sector events and networks to raise awareness of training opportunities.
Commissioning & Income Support
- Develop commissioning packages tailored to MATs, LA’s and other relevant organisations.
- Support pricing structures.
- Identify sustainable income opportunities for the charity via the training.
Quality Assurance & Evaluation
- Oversee monitoring and evaluation processes.
- Prepare reports for the charity as required.
Operational Coordination
- Coordinate scheduling, setup and delivery logistics for all training sessions.
- Manage bookings, confirmations, resource distribution, attendance recording and data collection
- Lead regular training team meetings to support planning and quality assurance.
- Support management and storage of training assets.
- Maintain regular communication with the Education Lead.
Working Environment & Culture
- Remote and flexible working within a digitally enabled national team.
- Supportive work–life balance, flexible leave arrangements and an organisational shutdown during part of December.
- Commitment to equality, diversity and inclusion, with lived experience valued.
Skills, Knowledge & Experience
Essential
- Relevant qualifications (teaching, SEND, adult learning, training design, project management).
- Ability to set priorities and align training with national guidance.
- Experience shaping or influencing SEND practice or programme development within an education context.
- Relationship building skills within the education sector.
- Strong organisational and project management skills.
- Excellent communication skills.
- Ability to work independently and as part of a team.
- Knowledge of the UK education sector.
- Familiarity with digital learning platforms.
- Willingness to gain an in depth understanding of PANS or PANDAS.
- Ability to work sensitively and confidently with the PANS and PANDAS community, including the YAB, creating safe and inclusive spaces.
Desirable
- Degree-level education or equivalent professional experience
- Experience contributing to strategic planning within education, a charity or Local Authority.
- Experience with CPD
- Experience leading multiagency or cross sector initiatives.
- Lived experience of PANS and PANDAS
Please do not submit your application by email, use the Charity Jobs application process.
Please do not use AI to write your covering letter, we really would much prefer to hear from you in your own words.
Please don't hesitate to ask if you have any questions about the role.
Registered Charity
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PANS PANDAS UK is the only UK charity supporting children and families living with the neuropsychiatric conditions PANS and PANDAS.
The client requests no contact from agencies or media sales.