Spotlight on Patient Associations:
The Lily Foundation

Fighting mito, finding hope

The Lily Foundation is the UK’s largest mitochondrial disease (mito) charity. Our vision is for a world where every mito patient has a voice and access to treatment, support to improve their life, and, ultimately, a cure.

The charity was founded in 2007 by Liz Curtis in memory of her daughter Lily, who died from mito at eight months old. Finding little specialist knowledge or support available 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 that has raised more than £10 million in the fight against mito and today supports over 1200 patients and families. The Lily Foundation forms a vital link between patients, doctors, and medical science bodies, run by a small team of dedicated staff backed by a medical board drawn from the UK’s top centers for mitochondrial research.

Together, we’re navigating the complexities of mitochondrial disease: today, raising awareness across the globe; tomorrow, unlocking the cure through pioneering research; forever supporting the mito community and empowering everyone to make a difference.

Find more information about The Lily Foundation at