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

Heartfelt thanks to Alison, our departing Head of Research

This month, The Lily Foundation bids a sad farewell to one of our long-term team members and supporters, Alison Maguire. Founder and CEO Liz Curtis pays tribute to the hard work, dedication and passion Alison has shown over the last 15 years, and the legacy she leaves in mitochondrial disease research.

Marathon effort to fight mito from everyone involved

A huge shoutout to all the incredible Lily runners who completed the London Marathon last weekend, raising an incredible £127,000 to help fight mitochondrial disease. This year, the world’s greatest marathon saw a record field of over 50,000 participants, and 44 of them wore Lily colours.

Brave boxers raise over £37,000 fighting mitochondrial disease

More than 500 excited spectators piled into The Clapham Grand for this year’s Lily Fight Night, eager to experience one of the most popular events in our calendar. They were treated to 11 fantastic fights, with many more supporters following the action via our YouTube live stream.

Drink tea to make a difference!

This month, help spread the word and fight mitochondrial disease by hosting a tea and cake event – introducing The Lily Foundation’s Mito Communi-TEA.