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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.

UK Mitochondrial Disease Research Institute

Expression of Interest: Theme Leads

Role title: Theme Lead, Scientific and Clinical Research Executive Board, UK Mitochondrial Disease Research Institute

Appointment type: Voluntary strategic leadership role

Application closes: 21st August 2026

Interviews: Tuesday 8th September 2026 (online via Teams)

Successful applicant will be asked to attend the first Board Meeting in London on 12th October

About the UK Mitochondrial Disease Research Institute

The Lily Foundation is working to establish the UK Mitochondrial Disease Research Institute (UKMDRI), a national, collaborative research institute designed to accelerate progress for everyone affected by mitochondrial disease.

Mitochondrial disease is complex, devastating and often life-limiting. Families affected by the condition urgently need better diagnosis, better care, better treatments and, ultimately, cures. The UK has world-leading clinical, scientific and research expertise in mitochondrial disease, but that expertise needs to be connected through a shared national structure with patients and families at its heart.

The UKMDRI will bring together clinicians, scientists, researchers, patients, families, charities and partner organisations to strengthen collaboration, reduce duplication, support clinical trial readiness and ensure that research is driven by the needs of those living with mitochondrial disease.

The Institute will be led by Professor Mike Hanna, Voluntary Scientific Director, with programme, governance and patient community support provided by The Lily Foundation.

We are now seeking outstanding senior leaders to join the Scientific and Clinical Research Executive Board, where they will lead one of the Institute’s five scientific themes and help shape the future of mitochondrial disease research in the UK. This is a unique opportunity to be part of a national strategic effort.

Scientific themes

The UKMDRI will be structured around five interconnected scientific themes.

Theme 1: National Clinical Registry

This theme will establish a co-ordinated national clinical registry for mitochondrial disease, building on existing expertise and initiatives such as MitoCohort. The registry will support better understanding of who is affected, how conditions change over time, what care patients receive and how services can be improved.

The theme will aim to link existing mitochondrial databases and patient cohorts under a single, secure governance framework, support clinical trial readiness, enable national reporting and provide a shared evidence base for research and healthcare planning.

Theme 2: National Mitochondrial Bioresource

This theme will co-ordinate access to well-characterised patient samples linked to reliable clinical information. Rather than creating a new biobank, the Institute will connect and harmonise existing collections across hospitals and universities under shared standards and governance.

The theme will develop a virtual national bioresource, making samples easier to identify and access for approved academic and industry research, while maintaining local ownership, patient trust and transparent oversight.

Theme 3: Disease Model Hub

This theme will connect UK laboratories developing models of mitochondrial disease, from cell systems to animal models. It will create a national catalogue of existing models, promote shared standards for validation and reproducibility and identify priority gaps for future model development.

The theme will support discovery science by enabling researchers to share tools, protocols and expertise, reduce duplication and strengthen collaboration across the UK and internationally.

Theme 4: Clinical Trial and Drug Discovery Platform

This theme will establish a co-ordinated national platform to support clinical trials, therapeutic development and drug discovery in mitochondrial disease. It will bring together clinical, data, academic and industry partners to improve trial readiness and accelerate translation from laboratory research to patient benefit.

A core element of the theme will be the responsible use of artificial intelligence, advanced analytics and secure data sharing to identify therapeutic targets, optimise trial design and support treatment development.

Theme 5: Building the Future Workforce

This theme will invest in the next generation of mitochondrial disease researchers, clinicians, research nurses and allied professionals. It will support clinical and non-clinical research training pathways, including PhD studentships, post-doctoral researchers, early-career fellowships, mentoring, mobility funding and networking.

The theme will help build a connected UK mitochondrial research community and support future leadership across discovery science, translational medicine, clinical care, trials and patient-centred research.

Choosing a theme

Applicants should indicate clearly in their Expression of Interest which theme they’re applying to lead.

Applicants may also note whether they would be willing to be considered for another theme if the selection panel feels their expertise is better aligned elsewhere.

About the role

Theme Leads will provide senior scientific, clinical or translational leadership for one of the Institute’s five research themes.

They will be UK-based, established leaders in mitochondrial disease, with the expertise, credibility, published research record and networks required to coordinate national activity.

Theme Leads will sit on the Executive Board and will play a central role in shaping scientific priorities, supporting delivery of the research roadmap, identifying opportunities for collaboration and ensuring that research activity remains ambitious, co-ordinated and patient-centred.

Key responsibilities

Theme Leads will be expected to:

• Provide senior leadership for one of the Institute’s five scientific themes
• Help shape the strategic direction, objectives and milestones for their theme
• Co-ordinate relevant NHS, academic, scientific and research partners
• Support national collaboration across mitochondrial disease research and care
• Identify opportunities for innovation, partnership and future funding
• Report theme-level progress, risks, opportunities and resource needs to the Executive Board
• Support the development of annual theme workplans and impact reporting
• Work closely with the Associate Theme Lead aligned to their theme
• Support and mentor future leaders in mitochondrial disease research
• Ensure that patient and family perspectives are considered within theme activity
• Contribute to the wider strategic leadership of the UKMDRI

Person specification

Theme Leads will be expected to demonstrate:

Essential criteria

• Evidence of expertise in mitochondrial disease research, mitochondrial clinical care or mitochondrial translational science
• Consultant appointment in NHS (including honorary academic consultants) or equivalent senior position in a non-clinical academic setting
• Track record of published research in mitochondrial disease
• Experience of leading collaborative research, clinical, translational and/or academic programmes
• Evidence of ability to co-ordinate activity across institutions, disciplines or professional networks
• Evidence of strong understanding of the UK mitochondrial disease research and/or clinical landscape
• Evidence of commitment to patient-centred research and meaningful mitochondrial patient community involvement
• Evidence of ability to contribute strategically to a national research institute
• Evidence of willingness to work collaboratively with other Theme Leads, Associate Theme Leads, The Lily Foundation and the wider mitochondrial disease community
• Experience of securing or contributing to major research funding

Desirable criteria

• Experience of national or international research leadership
• Involvement in one or more of the following: clinical trials, natural history studies, registry development, therapeutic development, diagnostics, genomics, myology, neurology, paediatrics, metabolic medicine, bioresources, disease modelling, workforce development or other mitochondrial disease research areas
• Experience of mentoring early-career researchers, clinicians or emerging leaders
• Experience of working with charities, patient organisations or lived-experience groups

Time commitment

The expected time commitment will vary throughout the year, but will include:

• Attendance at and preparation for Executive Board meetings, expected to take place quarterly
• Participation in theme-specific planning and reporting activity
• Preparation and review of relevant papers, workplans or progress updates
• Collaboration with the relevant Associate Theme Lead and Programme Manager
• Contribution to annual reporting and Institute-wide strategic planning

The role is intended to be proportionate and compatible with senior clinical, academic or research responsibilities, with up to 6 hours’ commitment per week.

Term of appointment

Theme Leads will be appointed for an initial term of three years, renewable once by agreement.

Appointments will be reviewed periodically to ensure that the role continues to meet the needs of the Institute and the relevant scientific theme.

The posts are non-remunerated, however reasonable expenses incurred in attending meetings will be paid, according to The Lily Foundation’s travel and subsistence policy.

How to apply

Please apply by submitting an Expression of Interest (EoI) and CV.

EoI instructions

• Please use the five headings below and follow the guidance for each.
• The page limit for the Expression of Interest is 4 pages (Arial 11 font): EoIs that exceed this may not be considered.

1. Scientific Theme (the Theme you are applying to lead); you can list more than one theme
2. Statement of relevant expertise against specific criteria above and motivation for applying. Please write your statement in lay person terms as shortlisted applications will be reviewed by a lay panel as part of the recruitment process
3. Summary of your published mitochondrial disease research publications (please state total number but discuss only the most relevant examples to fit within the page limit). Outline the actual impact or potential impact of your research
4. Summarise your leadership experience in mitochondrial disease
5. Short description of how you would contribute to the development and delivery of the relevant theme or themes

CV instructions

• The page limit for your CV is 3 pages (Arial, 11 font), including references.

Applications should be submitted by Friday 21st August 2026 to [email protected]

Interviews will take place on 8th September 2026 (online via Teams).

Selection process

Selection will be based on expertise, leadership experience, evidence of published, impactful research in mitochondrial disease, ability to support national collaboration and commitment to patient-centred mitochondrial disease research.

Why this matters

This is an opportunity to help build a national research structure that is ambitious, collaborative and rooted in the needs of patients and families.

By joining the UKMDRI leadership structure, Theme Leads will help ensure that mitochondrial disease research in the UK is better connected, more visible, more patient-centred and better placed to deliver meaningful change.

Equality, diversity and inclusion

The UKMDRI is committed to building an inclusive leadership structure that reflects the breadth of mitochondrial disease research, clinical care and lived experience across the UK. Applications are welcomed from all backgrounds, irrespective of race, colour, religion, gender, gender identity or expression, sexual orientation, national origin, genetics, disability, age or veteran status. We actively encourage applications from under-represented groups. We also recognise that many people take career breaks; an unbroken career history is not a prerequisite for success.

Applications are encouraged from individuals across relevant disciplines, institutions, geographies and professional backgrounds.

Role title: Associate Theme Lead, Scientific and Clinical Research Executive Board, UK Mitochondrial Disease Research Institute

Appointment type: Voluntary leadership development and delivery role

Application closes: 21st August 2026

Interviews: Monday 14th September 2026 (online via Teams)

Successful applicant will be asked to attend the first Board Meeting in London on 12th October

About the role

Associate Theme Leads will support the Theme Leads and provide additional leadership capacity across the UKMDRI.

These roles are intended for individuals who are on a trajectory to leadership and research independence, and who have clear potential to become future national leaders in mitochondrial disease research, translational science or clinical care.

Associate Theme Leads should be UK-based. Clinical researcher applicants should be at consultant level. Non-clinical applicants should have evidence of team leadership and may hold lectureship positions and/or funding in their own name. The role is designed to support delivery of the Institute’s scientific themes while also providing a structured opportunity for future leaders to contribute to national strategy, develop leadership experience and build cross-sector collaborations.

Key responsibilities

Associate Theme Leads will be expected to:

• Support the relevant Theme Lead in delivering the theme’s objectives and milestones
• Contribute to theme-level planning, co-ordination and reporting
• Lead defined work packages, projects or cross-theme initiatives where appropriate
• Support collaboration across NHS, academic, research and charity partners
• Help identify risks, opportunities and resource needs within the theme
• Contribute to Executive Board discussions and decision-making
• Support patient-centred approaches to research design, delivery and communication
• Help strengthen links between researchers, clinicians, patients and families
• Develop leadership experience within a national mitochondrial disease research structure
• Contribute to succession planning and future leadership capacity within the field

Person specification

Associate Theme Leads will be expected to demonstrate:

Essential criteria

• Evidence of a trajectory to leadership and research independence, relevant to role. Clinical applicants should be at consultant level
• Expertise in mitochondrial disease, with relevant experience in one or more of the following areas: neurology, myology, metabolic medicine, genetics, paediatrics, translational science, clinical trials, diagnostics, data science, laboratory science, bioresource development, disease modelling or workforce development
• Evidence of published research in mitochondrial disease (as clinical, translational or scientific contribution to mitochondrial disease)
• Evidence of potential to become a future leader in mitochondrial disease research, clinical care or translational science
• Evidence of commitment to patient-centred research and meaningful mitochondrial patient community involvement
• Evidence of ability to contribute to collaborative work across disciplines, centres or institutions
• Evidence of willingness to work collaboratively with the relevant Theme Lead, Programme Manager and wider Executive Board

Desirable criteria

• Experience of leading or co-ordinating a defined project, work package, study or service development activity
• Involvement in one or more of the following: clinical research, translational research, therapeutic development, diagnostics, genomics, registries, natural history studies, bioresources, disease models, workforce development or patient-centred research
• Experience of working with multidisciplinary teams
• Interest in developing national leadership experience
• Experience of engaging with patient organisations, charities or public involvement groups

Time commitment

The expected time commitment will vary throughout the year, but will include:

• Attendance at and preparation for Scientific and Clinical Research Executive Board meetings, expected to take place quarterly
• Participation in relevant theme meetings and planning discussions
• Contribution to reporting, workplans and delivery updates
• Leadership of specific work packages or cross-theme activities where agreed
• Regular communication with the Theme Lead and Programme Manager

The role is intended to be proportionate and compatible with clinical, academic or research responsibilities, with around 3 hours’ commitment per week.

Term of appointment

Associate Theme Leads will be appointed for an initial term of three years, renewable once by agreement.

The role is intended to support delivery of the Institute’s scientific themes while helping to develop the next generation of mitochondrial disease leaders.

The posts are non-remunerated, however reasonable expenses incurred in attending meetings will be paid, according to The Lily Foundation’s travel and subsistence policy.

How to apply

Please apply by submitting an Expression of Interest (EoI) and Curriculum Vitae (CV).

EoI instructions

• Please use the 5 headings below and follow the guidance for each.
• The page limit for the Expression of Interest is 4 pages (Arial 11 font): EoIs that exceed this may not be considered.

1. Scientific Theme (the Theme you are interested in supporting); you can list more than one theme;
2. Statement of relevant expertise against specific criteria above and motivation for applying. Please write your statement in lay person terms as shortlisted applications will be reviewed by a lay panel as part of the recruitment process;
3. Summary of your published mitochondrial disease research publications (please state total number, but discuss only the most relevant examples to fit within the page limit). Outline the actual impact or potential impact of your research;
4. Current role and responsibilities, and any leadership experience gained to date in mitochondrial diseases;
5. Short description of how you would contribute to the development and delivery of the relevant theme or themes;

CV instructions

• The page limit for your CV is 3 pages (Arial, 11 font), including references.

Applications should be submitted by Friday 21st August 2026 to [email protected]

Interviews will take place via Teams on 14th September 2026 (online via Teams).

Selection process

Selection will be based on relevant mitochondrial disease experience, leadership potential, ability to support collaborative delivery, commitment to patient-centred mitochondrial disease research.

Why this matters

This is an opportunity to help build a national research structure that is ambitious, collaborative and rooted in the needs of patients and families.

By joining the UKMDRI leadership structure, Associate Theme Leads will help strengthen delivery across the Institute while developing the next generation of mitochondrial disease leadership in the UK.

Equality, diversity and inclusion

The UKMDRI is committed to supporting inclusive leadership development across mitochondrial disease research and care. Applications are welcomed from all backgrounds, irrespective of race, colour, religion, gender, gender identity or expression, sexual orientation, national origin, genetics, disability, age, or veteran status. We actively encourage applications from under-represented groups. We also recognise that many people take career breaks; an unbroken career history is not a prerequisite for success.

Applications are encouraged from individuals across relevant disciplines, professional backgrounds, institutions and geographies, including those whose careers span clinical practice, research, translational science, diagnostics, data, laboratory science, workforce development or patient-centred work.