The Lily Foundation supporting everyone affected by mitochondrial disease and funding research into treatments.
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.

Our impact

  • £10m

    Raised
    since 2007

  • 1300

    Families
    supported

  • £200k

    Donated
    to patients

  • 23

    Research projects
    funded

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

‘March of the Day’ raises awareness and funds to fight mito

Last week comedian Kevin Day embarked on a mammoth ‘March of the Day’ challenge, walking 63 miles across London via thirteen football grounds. His aim was to spread the word about mito during global awareness week, but would his feet hold up and would he make it all the way? Find out more…

Meet the new faces driving our fundraising forward

Since 2007 we’ve raised an incredible £10 million, money that’s helped us support those affected by mitochondrial disease and fund research into treatments. We’ve no intention of taking our foot off the gas, so we’re delighted to welcome two new team members to this area of our charity – meet Nina and Victor.

Putting mito on the map

A massive thank you to everybody who got involved in this year’s awareness campaign as part of World Mitochondrial Disease Week. A host of activities took place up and down the country thanks to so many of our supporters embracing our mission to put mitochondrial disease on the map.