Fighting mito,
finding hope.
Donate through JustGiving to help The Lily Foundation fight mitochondrial disease and find hope for patients and their families.
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.
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.
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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.
To mark British Science Week (7th-16th March), we spoke with Rita Horvath, Professor of Neurogenetics at Cambridge and project lead at the new LifeArc Centre for Rare Mitochondrial Diseases. From early experiments in school to groundbreaking discoveries in mito, here’s her journey into science.
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!
Everyone at The Lily Foundation was heartbroken to learn of Frederik’s passing on March 1st following his battle with mitochondrial disease. Our deepest sympathies are with his family.
We've been proud to collaborate with their charity on vital research, and we reflect fondly on our special relationship with Frederik's mother, Julie. Read her story here.
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.
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