LifeArc Centre for Rare Mitochondrial Diseases

A landmark step forward in the search for effective treatments

We’re proud to share one of the most significant milestones yet for the mitochondrial disease community – the launch of the LifeArc Centre for Rare Mitochondrial Diseases. This new UK-wide initiative marks a step change in how we approach research and treatment, and it holds real promise for patients and families living with rare mitochondrial disorders.

The LifeArc Centre is a pioneering virtual hub that will unite the brightest minds in mitochondrial science. Unlike a traditional bricks-and-mortar facility, this national collaboration brings together leading researchers, clinicians, infrastructure and patient communities across the UK, all working with a shared mission: to fast-track scientific breakthroughs into real-world therapies.

Led by Professor Patrick Chinnery from The University of Cambridge, the centre is a partnership between LifeArc, a self-funded medical research charity, ourselves and Muscular Dystrophy UK (MDUK). Initial funding of £7.5 million has been provided by LifeArc, with MDUK committing additional investment over the next five years.

Key partners include University College London, Newcastle University and leading centres in Oxford, Birmingham and Manchester, creating a powerful network of mitochondrial research excellence.

What makes this centre different?

The creation of the centre comes at a critical time. Although mitochondrial disease currently has no cure, the last five years have seen major advances in our scientific understanding. These breakthroughs have opened new doors – from improved diagnostics to potential gene therapies – and the LifeArc Centre has been established to seize that momentum and turn it into meaningful change.

In its early stages, the centre will focus on three key areas:

• improving genetic testing and speeding up diagnosis
• identifying biomarkers to help track disease progression and treatment response
• developing and testing new therapies, including gene therapies, and preparing the ground for future clinical trials.

What makes this initiative stand out is its focus on genuine collaboration. For the first time, the UK’s leading mitochondrial specialists will work together at this scale, sharing expertise, data and cutting-edge technology.

How can patients and families get involved?

Patients and families can stay informed through our Research Zone – your go-to source for the latest breakthroughs, expert insights and cutting-edge developments in mitochondrial disease research. Alongside up-to-date news, clear summaries of complex studies and thought-provoking perspectives, you’ll also find regular updates on all the work happening within the LifeArc Centre.

Importantly, the voices of patients and families will be embedded in every part of the centre’s work. The Lily Foundation are leading on Patient and Public Involvement and Engagement (PPIE), ensuring that lived experience informs priorities and guides the direction of research. At the heart of this is IMPACT – our virtual panel made up of people affected by mitochondrial disease, helping to shape decision-making and ensure the research truly reflects the needs of the community.