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 mitochondrial disease patients still do not have a confirmed genetic diagnosis, and that’s simply not good enough. Without a diagnosis, there is no chance of finding a cure, accessing treatment or being considered for clinical trials. For many, this also means limited reproductive options, which can be one of the hardest challenges to face.

Millie and Tony lost their beautiful baby boy, Otto, to mitochondrial disease back in 2023. For Millie, receiving a confirmed diagnosis for Otto was incredibly important. Here she shares her story and explains why having answers matters. It’s stories like theirs that fuel The Lily Foundation’s determination to make change.

Help us to support families like Millie and Tony, and work towards improving the lives of everyone affected by mitochondrial disease. Together, we can find hope and work towards life-changing breakthroughs.

Mito news

Spread Christmas cheer whilst supporting The Lily Foundation

This Christmas, get ready to send festive greetings to your loved ones and support a great cause! We’re delighted to announce our partnership with Making A Difference Cards, offering a wide range of personalised charity Christmas cards that directly benefit The Lily Foundation and help us fight mitochondrial disease.

Rare disease ‘passport’ launched for mito disease patients

Patients living with mitochondrial disease deal with many unique and complex health challenges, often facing multiple medical appointments or even emergency hospital visits, sometimes with healthcare professionals unfamiliar with mito. We’re delighted to unveil a simple but brilliant solution that empowers mito patients.

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.