The Lily Foundation for research into Mitochondrial Disease and other metabolic disorders
The Lily Foundation logo featuring a butterfly, hearts and an 'x' for a kiss

Fighting mito,
finding hope.

Happy girl with mito engaged in play with her carer at The LIly Foundation family support weekend Happy girl with mito engaged in play with her carer at The LIly Foundation family support weekend

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Fighting mito, finding hope

Our 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.

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

What is mitochondrial disease?

smiley young boy with mito, walking down a sunny lane with the assistance of a walking frame

Every other day in the UK, a baby is born who may develop serious mitochondrial disease.

Mitochondrial disease, or ‘mito’, is a rare genetic disorder that can affect people in very different ways. Symptoms can start at any age and can involve any organ in the body. There is currently no cure for mitochondrial disease, and in some cases, it can be life-limiting. However, treatments to manage symptoms are available and there is active research taking place globally to find a cure. Thanks to research, we are learning more daily about mitochondrial disease.

Mitochondrial dysfunction has been identified as a key factor in other more common diseases including dementia, Parkinson's disease, epilepsy and cancer. The research we fund and support not only holds promise for individuals affected by mitochondrial disorders, but also has the potential to benefit millions of others.

That’s why, despite being a little-known disease, mito could be the key to some of the most important medical breakthroughs of our time.

  • £10m

    since 2007

  • 1200


  • £200k

    to patients

  • Over 20

    Research projects

See our work in action

In 2024, 80% of patients do not have a genetic diagnosis for mitochondrial disease, and that’s simply not good enough. Without one, there is no chance of finding a cure, being offered treatment or simply being accepted on a clinical trial. And, possibly the hardest thing of all for some, reproductive options are severely limited.

Last year, Millie and Tony lost their beautiful baby boy, Otto, to mitochondrial disease. For Millie, getting a confirmed diagnosis for Otto was incredibly significant, and here she explains why. It’s stories like theirs that make The Lily Foundation determined to change things.

Help us to support parents like Millie and Tony, and improve the lives of everyone affected by mitochondrial disease.

Mito news

How people power is spreading the word

When his son Jude was diagnosed with mitochondrial disease, like so many other parents Dale had never heard of the condition. But since that day he’s made it his mission to spread the word about our work, doing more than his fair share in the fight against mito.

This year’s Lily Weekend – the biggest… and best yet!

Last weekend, over 80 families affected by mitochondrial disease came together in Warwickshire for what turned out to be The Lily Foundation’s biggest Family Support Weekend since the event first began. And we know we’re a little biased, but we also think it was our best!

A journey through mitochondrial disease

When the debilitating symptoms of his mitochondrial disease began to manifest themselves, Paul struggled to come to terms with the impact on his physical and mental health. But an unexpected friendship, and a discovery of art therapy, have helped him to live with his diagnosis.

Missed out on the London Marathon?

Why not sign up for the London Landmarks Half Marathon next April instead? It might be half the run but it’s just as much fun. Be quick – places are filling up fast!