1. What is the LifeArc Centre for Rare Mitochondrial Diseases?
The LifeArc Centre for Rare Mitochondrial Diseases is a pioneering UK-wide initiative that aims to accelerate scientific breakthroughs into life-changing treatments for patients with rare mitochondrial diseases.
A major milestone for the mito community, this virtual centre is not a specific location but a national platform that will connect leading researchers, clinicians, infrastructure and – critically – patients to speed up the development of therapies and clinical trials for mitochondrial disorders.
2. Who is behind the creation of the centre?
The centre is a national partnership between LifeArc, a self-funded, non-profit, medical research organisation, and Muscular Dystrophy UK (MDUK). It will be led by Professor Patrick Chinnery, Professor of Neurology at the University of Cambridge and Honorary Consultant Neurologist at Cambridge University Hospitals NHS Trust.
Key partners will include The Lily Foundation, University College London, Newcastle University and three other centres – Oxford, Birmingham and Manchester – creating a national network of research excellence in mitochondrial science.
3. Why was the centre created?
There is currently no cure for mitochondrial disease. However, new opportunities to treat the condition have been identified in the last five years, meaning that it’s a critical time for developing research and bringing new treatments to patients for testing. By bridging the gap between scientific research and clinical development, this initiative will focus on areas of unmet need and is committed to delivering life-changing advancements to patients.
4. What makes this centre different from other mitochondrial research initiatives?
The centre will bring together leading mitochondrial scientists and clinical specialists from all over the UK like never before to access cutting-edge facilities and training. Collaboration with patient organisations like ourselves will also help to advance meaningful research, and the multi-site centre will ensure promising research can be translated into improved treatment options for patients living with mitochondrial disorders.
5. How will the centre help people living with mitochondrial disease?
The LifeArc Centre for Rare Mitochondrial Diseases is focused on three key areas:
- improving genetic testing and diagnostic pipelines to help patients receive faster and more accurate diagnoses
- identifying biomarkers, which are measurable signs of disease that can help track progression and treatment effectiveness
- developing and testing new treatments, ensuring they’re safe and effective before moving to clinical trials.
The establishment of the centre marks a pivotal chapter in the pursuit of better diagnostics, treatments and hope for those affected by mitochondrial diseases.
6. Is the centre only for people in the UK?
The LifeArc Centre for Rare Mitochondrial Diseases is based in the UK, and its core services are designed to support patients and families here. However, the research, data and breakthroughs it generates will have global impact. Only through international effort will we be able to improve diagnosis, treatment and care for everyone affected by mitochondrial disease, wherever they are in the world.
7. How can patients or families get involved with the centre?
As the centre is still in its early stages, the exact ways that mito patients and families can get involved – such as taking part in studies, feedback groups or events – are still being developed.
To keep up to date with the centre’s progress and future opportunities to participate in research, we recommend signing up to our monthly newsletters and following us on social media, where we’ll be sharing updates hot off the press. You can also visit our Research Zone to explore the latest news, breakthroughs and expert insights in mitochondrial medicine. And finally, consider joining IMPACT – our virtual panel made up of those who have lived experience of rare mitochondrial disorders.
8. How exactly will patient voices be included in the centre’s work?
The Lily Foundation are leading the centre’s Patient and Public Involvement and Engagement (PPIE) strategy, ensuring that the experiences and perspectives of those affected by mitochondrial disease are embedded in everything the centre does.
At the heart of this is IMPACT, our dedicated PPIE panel. This virtual group brings together mitochondrial disease patients, families and carers to help shape priorities, inform decisions and guide the direction of research. Through IMPACT, the centre will work in partnership with the mito community – not just consulting them but actively involving them in shaping the research agenda.
If you’d like to contribute your voice and help influence the future of rare mitochondrial disease research, we’d encourage you to join IMPACT and be part of this important work.
9. Where is the centre based?
The LifeArc Centre for Rare Mitochondrial Diseases isn’t a physical location – it’s more like a collaborative research initiative. That means bringing together specialists, researchers and resources from all over the country to focus on improving diagnosis, care and treatment options for people with mitochondrial disease. Although there isn’t a specific building someone can visit, the work taking place could still benefit patients through their care team or future treatment.
10. How is the centre funded and how long will it run?
LifeArc have invested £7.5 million in the project, however this is just the beginning of the initiative. MDUK have pledged to contribute additional funding over the next five years to help sustain and expand the centre’s work, with a strong focus on translational research – turning lab breakthroughs into real-world treatments.
11. What are the centre’s main goals in the first few years?
The Lifearc Centre for Rare Mitochondrial Diseases is still in the early stages of development. In this early phase, the focus is on laying the groundwork – things like setting up governance structures, establishing how patients and families will be involved in shaping future projects and developing more accurate tools to support faster and more accurate diagnoses.
Over the coming years, the centre hopes to begin research into potential treatments, including exploring gene therapy approaches for conditions like MNGIE and POLG. Further down the line again, the ambition is to launch clinical trials and even explore other therapeutic options as the science evolves.
It’s an ambitious project with a lot of moving parts, but the ultimate aim is to build a clear pathway from diagnosis to treatment – and to do so in close partnership with the patient community every step of the way.
12. Can I support the centre or donate to its work?
While the LifeArc Centre is funded through a major partnership, support from individuals and communities is still vital. Donations to The Lily Foundation help us work alongside the centre by funding patient support, awareness and further research initiatives that directly benefit those affected by mitochondrial disease. Every contribution plays a part in fighting mito and finding hope for the future.