New research centre will unlock tests and treatments for people living with rare mitochondrial diseases

We’re delighted to announce, thanks to our partnership with LifeArc and the Lily Foundation, the establishment of a new research centre, giving hope to thousands of people living with rare mitochondrial diseases.

The LifeArc Centre for Rare Mitochondrial Diseases aims to get access to improve diagnostics, treatments and potentially cures. The £7.5million centre will create a national platform connecting patient groups, knowledge, and infrastructure to help accelerate new treatments getting to clinical trials.

Led by Professor Patrick Chinnery, Professor of Neurology at the University of Cambridge and Honorary Consultant Neurologist at Cambridge University Hospitals NHS Trust, along with key partners at University College London, Newcastle University and three other centres (Oxford, Birmingham and Manchester).

Positive change on the horizon

Globally, there are more than 300 million people living with rare conditions – with mitochondrial diseases affecting 1 in 5,000 people. They cause progressive damage to the brain, eyes, muscles, heart and liver, leading to severe disability and a shorter life.

There is currently no cure for most of these rare conditions, however, new opportunities to treat mitochondrial diseases have been identified in the last five years, meaning that this is a critical time for research development.

Kate Adcock, Director of Research and Innovation at the charity said: “We’re delighted to partner with LifeArc and the Lily Foundation to support Professor Patrick Chinnery and teams across England for this much-needed effort for rare mitochondrial conditions. We believe the Centre has the potential to deliver positive change to people living with these conditions. Also, we recognise the importance of attracting and retaining researchers in the field of muscle wasting and weakening conditions and hope that, through our support, we’ll be able to develop this vital resource.”

A bigger investment into research

LifeArc Centre for Rare Mitochondrial Diseases along with three other new centres, The LifeArc Centre for Rare Respiratory Diseases, LifeArc Centre for Rare Kidney Diseases, LifeArc Centre and the LifeArc Centre for Acceleration of Rare Disease Trials, have been awarded a share of nearly £40 million over five years, as part of LifeArc’s broader commitment to the rare disease translational research field.