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.

Did you know?

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 mito, 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 mito.

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

Being diagnosed with mitochondrial disease can be not only a frightening and upsetting time, but it can also be very lonely. Because mito is so rare, sometimes friends and family just don’t understand, so it’s hard to find people who are in the same situation to talk to, to share hopes and fears with, and find support.

And that’s why we exist, for patients like Bal. Here’s her story...

What’s new?

Cinderella Ball raises a magical £64,000 to help fight mito

Once upon a time, there was a beautiful ball held in a fabulous hotel for a group of very special people. That time was last Saturday, and that occasion was our annual charity ball, the most anticipated event in the Lily calendar. Read our review of this fairytale fundraiser, held at London’s Park Plaza Riverbank Hotel and attended by almost 300 glamorous supporters.

Progress takes time but we’re building momentum

Time is the key to so many discoveries in science, technology, engineering and maths, so it makes a fitting theme for this year’s British Science Week (8th-17th March). We hear from Renata, a bioinformatician who’s recently joined our new Precision Diagnostics project, about how time is playing a key part in both the diagnosis of mitochondrial diseases and the evolution of the technology involved.

Delving deeper into the diagnostic journey

Did you know there are around three and a half million people in the UK living with a rare disease? But what’s it like getting a diagnosis for, and living with, a disease that few people, even within the medical community, have heard of? These are questions that Dr Stella Johnson from Cardiff University focused on in her recent Masters, and when she needed some help with her study, she knew just where to turn.

Lily Fight Night is back!

Tickets are selling fast for this unforgettable evening on 2nd May. Grab yours today and help give mito a knockout punch.