The Lily Foundation’s vision is for a world in which every mitochondrial disease patient has a voice and access to treatment, support to improve their life and, ultimately, a cure.

Mitochondrial disease, or mito, is a rare, complex and incurable genetic disorder that affects people in very different ways, often affecting babies and young children. We’re the UK’s leading mitochondrial disease charity, and the largest charitable funder of mitochondrial research in Europe.

Our charity was founded in 2007 by Liz Curtis in memory of her daughter Lily, who died from mito at 8 months old. Finding little in the way of specialist knowledge or support to help her through her ordeal, Liz set out to provide answers for herself and others in her situation.

What began as an informal network of family and friends has grown into a national charity run by a small team of dedicated staff. Today we support over 1200 families, work tirelessly to raise awareness of this rare disease, fund research into treatments and a cure, and form a vital link between patients, doctors and medical science bodies.