Mitochondrial Disease Charity - The Lily Foundation
The Lily Foundation logo featuring a butterfly, hearts and an 'x' for a kiss

Fighting mito,
finding hope.

Young mito patient on a mat surrounded by play items at the Lily Family Support Weekend Young mito patient on a mat surrounded by play items at the Lily 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.

Become a mito hero

Sign up for Lily Fight Night 2025 and train for the experience of a lifetime. Get fit, step into the ring and help fight mitochondrial disease.

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

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

Mitochondrial disease, or ‘mito’, is a rare, complex and difficult-to-diagnose genetic disorder that affects people in very different ways. It can affect any organ at any age, and often occurs in babies and young children. There is currently no cure, but we’re working hard to change that, and are the largest charitable funder of mitochondrial research in Europe.

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 with mitochondrial disorders, but has the potential to benefit millions of others too.

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

Find out more

Our impact

  • £10.7m

    Raised
    since 2007

  • 1300

    Families
    supported

  • £200k

    Donated
    to patients

  • 23

    Research projects
    funded

See our charity work in action

In 2025, 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

Stepping into the ring to fight for a special cause

Harry and Finn, two brave young men who have never set foot in a boxing ring before, have signed up to take part in Lily Fight Night this May. They’d never heard of mitochondrial disease or The Lily Foundation before, so ahead of the big fight we asked them why they’re putting their youthful bodies on the line for a cause they’ve only just discovered.

Lily Manchester Comedy Night 2025

For the first time ever, The Lily Foundation are bringing the laughs to the north! Help make history at our first-ever Lily Manchester Comedy Night, with MC Sally-Anne Hayward and comics Josh Jones, Chris Washington and Faizan Shah completing a fantastic line-up. Grab your ticket today and let’s fight mitochondrial disease, one joke at a time!

Making an IMPACT in the fight against mitochondrial disease

At The Lily Foundation, we understand that true progress in the fight against mitochondrial disease starts with listening to those who live with the condition. That’s why, after the success of our pilot Expert Patient Input Committee (EPIC) last year, we’re excited to announce its evolution into something even bigger and better – introducing IMPACT!