Lily Foundation

The Lily Foundation, established in 2007 by Liz Curtis following the loss of her daughter to mitochondrial disease, is the UK's leading specialist charity dedicated to transforming heartbreak into hope for families affected by this rare, incurable genetic disorder. Its core mission focuses on funding high-quality research for improved diagnosis, effective treatments, and ultimately a cure, while providing vital emotional support, advocacy, and awareness-raising for patients across all ages and their families. Guided by values of compassion, scientific rigour, patient empowerment, and collaboration, it uniquely integrates direct services—like peer support networks, the annual Lily Family Weekend, and clinician training—with translational research, bridging personal needs and scientific advancement through trusted NHS and academic partnerships.

It exclusively funds mitochondrial disease initiatives, prioritising laboratory/clinical research, genetic diagnostics, patient registries, trial recruitment, family welfare, and professional education at UK universities, NHS centres, and research consortia. Beneficiaries include children, adults, families, and clinical researchers, with a patient-centred ethos ensuring real-world impact via UK-wide activities in England, Wales, Scotland, and Northern Ireland.

Eligible applicants are UK-based academic institutions and established research bodies (not general charities), with a preference for medium-to-large organisations demonstrating expertise; unsolicited applications are not accepted. Typical project grants range from £25,000 to £100,000 (up to £200,000 for collaborations) over 1-3 years, awarded annually via email during spring/summer calls announced on the website—no rolling deadlines or expressions of interest outside formal rounds. Exclusions include core costs, capital projects, non-research activities, and non-UK entities, distinguishing it as a holistic funder uniquely combining research investment with comprehensive family support.