Our vision for a world without mitochondrial disease. Driven by hope. Powered by discovery.
For too long, mitochondrial disease has been incurable, leaving many families with uncertainty, limited time and few treatment options. The UK Mitochondrial Disease Research Institute is The Lily Foundation’s bold new vision to change that.
A nationally co-ordinated, patient-driven ecosystem designed to bring people, data and infrastructure together, accelerating research and transforming how mitochondrial disease is understood and treated. A place where science meets impact, and ideas turn into real change for patients and families.
The vision driving this Institute
Our vision is for a world without mitochondrial disease. That’s why we’re building something the UK has never had before – something that will unite the UK’s world-leading expertise in mitochondrial disease by connecting research, clinical care and patient insight into a single national pathway.
The UK has world-class researchers. It has extraordinary clinicians. It has patients and families who are engaged and committed. And it has promising science.
But what it’s lacked is co-ordination and infrastructure. Not in the sense of bricks and mortar, or a new physical centre, but the joined-up, national systems that make collaboration easier and progress faster.
A structure that enables the best ideas to connect and data to flow; one that enables samples to be accessible and trials to be supported, and that enables researchers to collaborate, not compete.
That’s what’s led us to the UK Mitochondrial Disease Research Institute, where science meets patient need, and where a vision becomes reality.
The Institute will shorten the long, uncertain road from diagnosis to discovery, and from discovery to delivery of real, life-changing treatments.
There’s a long road ahead, but our mission is clear: to accelerate mitochondrial research by uniting researchers, patients and data, connecting the expertise and co-ordinating the discovery to find cures.
Guiding the Institute’s vision
The UK Mitochondrial Disease Research Institute will be guided by Professor Mike Hanna, whose extensive expertise and national leadership span the NHS, academic and charitable sectors. With a proven track record of driving impact, he brings vision and insight to every aspect of the Institute’s work, shaping its mission and charting its path forward.
Consultant Neurologist at University College London, Mike is a world-renowned expert in mitochondrial disease whose work has transformed both research and patient care. For decades, he’s combined clinical excellence with groundbreaking science, bringing hope to families and patients and turning complex discoveries into real-world treatments.
With Mike at the helm, we can take one step closer to a future where mitochondrial disease is not just managed, but truly treated.
Why The Lily Foundation?
Since The Lily Foundation began almost 20 years ago, we’ve grown into the UK’s leading mitochondrial disease charity, funding research, supporting patients and pushing for change.
We’re trusted by families and respected by clinicians and researchers. We’ve helped transform diagnosis, supported landmark research programmes and brought the patient voice into the heart of science.
Now we’re taking the next step. The launch of the UK Mitochondrial Disease Research Institute marks a bold move from individual projects to a joined-up, pioneering approach that will transform the way mitochondrial disease is researched, understood and treated.
Be part of the journey
The UK Mitochondrial Disease Research Institute is the beginning of a collective national effort to change what mitochondrial disease means for families.
This vision is bigger than any one organisation. But we’re proud to be leading the way.
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