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

Donate today

Donate through JustGiving to help The Lily Foundation fight mitochondrial disease and find hope for patients and their families.

Make a donation

The Big Lily Bid

Don’t miss out on some one-of-a-kind celebrity memorabilia at our exclusive online auction.

Bidding now open – hurry, auction closes at 10pm on Friday 2nd May!

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

Get involved...

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.

Latest news

Sunny skies and big smiles at London Landmarks

What a day! Last weekend, the streets of London were buzzing with energy as Team Lily took on the London Landmarks Half Marathon – and what a race it was.

If you’re thinking this looks like a fun way to fundraise, why not register your interest today and join Team Lily in next year’s race.

Lily Manchester Comedy Night 2025

Just announced – the wonderful Jon Richardson will be making a special appearance at our Manchester Comedy Night on Wednesday 18th June! MC Sally-Anne Hayward and comics Josh Jones, Chris Washington and Faizan Shah complete a fantastic line-up. Grab your ticket today and help make history at our first ever northern night out.

Finding a platform to start spreading the word

When Maddie was diagnosed with mitochondrial disease at the age of 22, she and her family felt lost and overwhelmed. Attending their first Lily event gave them hope, a sense of community and a platform to raise awareness. Now they’re on a mission to make a difference – for Maddie, and for others facing similar challenges.