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The Lily Foundation is the UK’s leading charity supporting people affected by mitochondrial disease. We fund vital research, provide specialist information and support to patients and families and raise awareness of a complex and little-known condition.

Working at Lily means being part of a close‑knit, committed team driven by lived experience and a shared determination to create change. From accelerating research and championing patient voices to delivering compassionate support and fundraising to drive progress, everything we do is focused on improving outcomes – today and for the future.

If you’re motivated by purpose and want your work to truly matter, take a look at our current opportunities and join us in fighting mito and finding hope for everyone affected.

Public and Patient Involvement and Engagement (PPIE) Manager

Contract: Permanent, 28 hours per week (0.8 FTE)

Work Pattern: Flexible (worked over 4 or 5 days to suit your circumstances)

Salary: £26,400 – £28,000 (£33k–£35k FTE)

Location: Remote (UK-based)

Closing date: Monday 11th May 2026

Interviews: W/c 18th May 2026

About The Lily Foundation

The Lily Foundation is the UK’s leading charity supporting people affected by mitochondrial disease. We work to improve lives, drive research and bring hope to families facing these complex and often devastating conditions. At the heart of our work are the patients and families whose experiences shape everything we do.

About the role

We’re seeking a PPIE Manager to lead and strengthen patient involvement across mitochondrial disease research. As an equal partner in the LifeArc Centre for Rare Mitochondrial Diseases, The Lily Foundation leads the programme’s patient and public involvement strategy.

While the initial priority for this role is delivering the PPIE strategy for the LifeArc Centre, as a permanent member of the team, you’ll be responsible for building a sustainable involvement infrastructure that extends across all Lily Foundation research workstreams.

You’ll become a ‘patient expert’ who can bridge the gap between the patient community and the scientific world. You’ll be proactive in upskilling and empowering both patients and researchers, ensuring that lived experience remains the compass for future research.

Key responsibilities

• Lead LifeArc Centre delivery: Work closely with LifeArc leadership and researchers to embed meaningful patient involvement across research activities and work packages.
• Develop the IMPACT network: Grow and support our national patient involvement network, identifying opportunities for families to contribute to research design and documentation.
• Deliver training and capacity building: Develop and deliver training, guidance and workshops to upskill patients, families and researchers in effective PPIE practices.
• Translate and communicate research: Work with our Marketing Team to provide content for the promotion of research news and medical information through social platforms and web-based materials.
• Facilitate focus groups and webinars: Organise patient focus groups to develop a strong knowledge of community needs and lead our quarterly online ‘Zoom Room’ sessions.
• Evaluate and report impact: Measure and share the ‘real world’ impact of PPIE activity to demonstrate its value to LifeArc partners and funders.
• Shape future strategy: Support the development of the UK Mitochondrial Disease Research Institute, ensuring lived experience remains central to the future direction of mitochondrial research.

Person specification

We’re looking for someone who blends a professional background with a genuine heart for our cause.

Essential knowledge and skills

• Professional background: A background in science, nursing or research, with the proven ability to digest complex medical concepts and ‘translate’ them into accessible, jargon-free content.
• PPIE expertise: A deep understanding of Patient and Public Involvement and Engagement best practices and the different stages of the research cycle.
• Training and facilitation: Confidence in designing and delivering workshops or capacity-building activities for audiences ranging from families to senior researchers.
• Exceptional communication: Confidence in building relationships with families, senior academic leads and industry partners.
• Organisational drive: High levels of organisation and the ability to work independently to manage multiple priorities within a ‘small but mighty’ remote team.

Essential experience

• Direct engagement: Substantial experience working directly with patients, families or the public within a charity, research or healthcare setting.
• Delivering PPIE: A proven track record of delivering involvement activities that have influenced research or service design.
• Impact reporting: Experience in measuring and demonstrating the ‘real world’ value of patient engagement to stakeholders and funders.

How to apply

Please submit your CV and a short cover letter outlining your interest in this role and how your skills and experience meet the person specification to [email protected].

We reserve the right to close the application window early and advise candidates to apply in good time to avoid disappointment. We particularly welcome applications from people with lived experience of mitochondrial disease or other rare conditions.