Every other day in the UK, a baby is born who may develop serious mitochondrial disease
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.
What does it take to live with mitochondrial disease?
We want to show you just what it takes to live with mitochondrial disease.
Meet Harry, Mandy, Katie, Tom and Leia, all real people, living with mito every day. Leia and her family show incredible courage as they fight her incurable condition. Harry and his mum Mandy have hope and belief for the future. They all have what it takes – but they can’t do it alone.
With your support, The Lily Foundation can keep providing care for families like these, funding vital research and finding hope where it’s needed most. Do you have what it takes to help us fight mito? Donate today to make a difference.
Team Hope has done it! Supported by the incredible Swindon running community, Hope’s mum Caroline and friends smashed through their £50,000 fundraising target at the Bath Half Marathon earlier this month. From Parkruns to plane jumps, their determination and generosity are helping us drive vital research and support for families living with mitochondrial disease.
Leading mitochondrial disease expert Professor Bobby McFarland has been recognised in the TIME100 Most Influential People in Health 2026, marking a significant moment not just for his work, but for the entire mitochondrial disease community. We spoke to him about what this accolade means personally, and for the whole community.
Last weekend our spectacular Burlesque Ball raised an incredible £100,000 to drive mitochondrial research forward. An evening filled with glamour and sparkle, it was also filled with hope – hope for a future where we’re no longer simply managing mitochondrial disease but curing it. A future brought one step closer with the launch of our ambitious new UK Mitochondrial Disease Research Institute.