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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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

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Our impact

  • £11m

    Raised
    since 2007

  • 1300

    Families
    supported

  • £200k

    Donated
    to patients

  • 23

    Research projects
    funded

See our charity work in action

At just 16 years old, Elinor faced challenges most of us will never fully understand. Living with mitochondrial disease – a rare, progressive and currently incurable condition – she experienced pain, exhaustion and uncertainty every day.

Despite her diagnosis, Elinor was full of spirit, strength and insight. She was determined to live her life with courage, and to help others understand what it truly means to live with mito.

This is her story.

Help us to support patients like Elinor, raise awareness of mitochondrial disease and fund research into treatments and a cure.

Help us to fight mito and find hope for everyone affected.

Latest news

Five great reasons to run the London Marathon for Lily

Were you lucky enough to get a place in the ballot for next year’s London Marathon? From dedicated cheering squads to free beer and a massage, here are five great reasons to run this once-in-a-lifetime charity challenge for The Lily Foundation and help fight mitochondrial disease.

Final trial funding for promising mito treatment

There’s promising news for the mito community – Khondrion have secured major funding to support the final clinical trial of a potential new treatment targeting a specific genetic form of mitochondrial disease. With so much research happening globally, it’s always exciting to see a project moving closer to delivering real impact.

Jazz festival hits the right note for The Lily Foundation

We’re delighted to announce that this year’s Battersea Jazz Festival, taking place from 3rd to 12th July 2025, will be supporting The Lily Foundation – with £1 from every ticket sold going towards our work fighting mitochondrial disease.

Read on to find out more and purchase tickets.