Board Trustee

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.

Join the Board of The Lily Foundation: Trustees neededAre you ready to use your unique expertise to shape the future of a leading UK charity?

The Lily Foundation is the UK’s leading charity dedicated to fighting mitochondrial disease. Our mission is clear: to find a cure by funding groundbreaking research, while providing unwavering support and hope to affected individuals and their families. Mitochondrial disease is a rare, devastating genetic condition with no current cure.

To fuel our next phase of scale and community impact, we are expanding our Board of Trustees and seeking two distinct, high-impact leaders to join us in a strategic advisory partnership. As a Trustee, you will play a crucial role in the strategic development and governance of the charity, ensuring our mission to improve the lives of individuals affected by mitochondrial disease is achieved through funding groundbreaking research, supporting families, and raising vital awareness.

We are currently recruiting for two distinct vacancies on our board:

Role 1: The Commercial Leader

We are looking for an established business leader, entrepreneur or senior commercial operator (currently running a high-profile business or recently stepped away) to join our board. You will leverage your networks and commercial acumen to act as a growth partner, helping our Senior Management Team challenge the status quo, diversify funding streams and unlock strategic corporate partnerships. Lived experience of mitochondrial disease is desirable.

Role 2: The Medical Expert – an interest in mitochondrial disease desirable

We are seeking a clinical or medical professional who will help guide our research funding strategies and advocate for improved services for our community, preferably with direct experience of either commissioning or undertaking significant research.

Key responsibilities:

• Strategic Mentorship & Governance: Provide high-level stewardship and direction to ensure alignment with our core mission, acting as a supportive sounding board for the Senior Management Team.
• Financial Sustainability: Oversee the charity’s financial health, ensuring robust accountability and the smart allocation of capital toward research and family support.
• Partnership & Influence: Leverage your unique professional network or clinical standing to build bridges with corporate partners, scientific bodies, and key stakeholders to grow the foundation’s profile.
• Community Advocacy: Support our advocacy efforts to raise awareness of mitochondrial disease and champion improved services for affected individuals and their families.
• Collaborative Stewardship: Actively participate in quarterly board meetings and specialized subcommittees, bringing your specific lens (commercial or medical) to solve complex organizational challenges.

Qualifications & skills:

• Lived or Professional Connection: A profound commitment to the mito community, either through professional medical expertise or a desire to apply high-level business success to a cause that matters.
• Strategic Sounding Board: Ability to think creatively and collaboratively, translating your professional background into light-touch, high-impact guidance for an agile charity team.
• Ecosystem Integrity: Strong professional ethics, emotional intelligence, and an understanding of how to balance financial sustainability with empathetic community care.

What you will bring:

• High-Level Stewardship: A desire to act as a committed mentor and strategic sounding board, rather than an operational manager.
• Mission-Impact Focus: The ability to balance rigorous governance and financial sustainability with deep empathy for the community we serve.
• Collaborative Integrity: A steady hand ready to contribute to quarterly board meetings and specialised committees.

This is an extraordinary opportunity to apply your professional stature to a cause that fundamentally changes lives.

• To find out more about this opportunity or to submit your expression of interest, please contact: [email protected].