• Self-funded medical research charity LifeArc launches call to inject £40m into UK rare disease research ecosystem
  • Funding will create four to five new centres of excellence in translating rare disease research – helping scientists to progress lab-based ideas into new diagnostics and therapeutics for patients with rare diseases
  • Centres to become focal points for rare disease research translation, knowledge-sharing and engagement with the patient community across the UK
  • With licensed medicines only available for a very limited number of the estimated 7,000+ rare and ultra-rare diseases, LifeArc’s investment will accelerate the impact of the UK rare disease research community
  • Latest initiative in LifeArc’s strategy to invest up to £1.3bn by 2030 in life science research where it can bring the greatest impact for patients

24 April 2023: LifeArc is inviting applications from academic institutions for its latest £40m initiative to fund four to five new Translational Rare Disease Centres in the UK, along with a separate co-ordinating hub.

LifeArc specialises in early-stage translation – the advancement of scientific discoveries towards patient benefit, developing the next generation of diagnostics, treatments and cures.

Under the initiative, co-ordinated research carried out at the new Translational Rare Disease Centres will capitalise on the UK’s rare disease research base and help deliver new therapeutics and diagnostics for patients with a rare disease in the UK and around the world.

“Globally, there are more than 300 million people living with rare diseases and there are no approved therapies for over 90% of these conditions.  The UK has a strong rare disease research base and we hope this funding will give impetus to the community, increase the volume and depth of research, foster collaborative approaches and ultimately find answers and solutions for patients living with a rare disease,” explains Dr Catriona Crombie, Associate Director Technology Transfer at LifeArc.

LifeArc CEO, Melanie Lee, said: “Life science research is full of exceptional ideas. Our mission is to unlock their potential and facilitate the development of the next generation of diagnostics, treatments and cures. This £40m investment in rare disease translational research is a key part of our commitment to spend £1.3 billion by 2030, targeting areas of unmet need where we can unlock science, accelerate medical progress and have the greatest impact for patients. Diseases are becoming more specifically defined on the basis of discrete genetics and mechanisms that define smaller patient groups, so supporting platforms for rare disease R&D should also have broader impact on breakthroughs in medicine.”

Collaborative applications, led by UK academic institutions are being invited to form the Translational Rare Disease centres, which are intended to strengthen the UK’s rare disease translational capability by:

  • increasing the volume of rare disease research delivered and catalysing translation of the rare disease research base
  • supporting the establishment and progression of careers in rare disease translational research
  • increasing the understanding of the needs of rare disease patients with industry and policy makers
  • becoming a central point for engagement with the patient community

The £40m investment is part of LifeArc’s broader commitment to the rare disease translational research field. Most recently the charity awarded a total of £3 million to six UK universities to accelerate research that will help people living with rare diseases. In addition, the LifeArc Philanthropic Fund awards grants to academics with promising rare disease translational research projects and since 2017, £14.6m has been awarded to 45 research projects, addressing 33 rare disease indications.

More information about the Translational Rare Disease Centres – including details on how to apply – can be found here: Rare Disease Funding | Translational Rare Disease Centres.


For further information please contact:

Consilium Strategic Communications
Tracy Cheung, David Daley, Melissa Gardiner, Lindsey Neville

Tel: +44 (0) 20 3709 5700

Notes to editors

About LifeArc

LifeArc is a self-funded, non-profit medical research charity. We take science ideas out of the lab and help turn them into medical breakthroughs that can be life-changing for patients. We have been doing this for more than 25 years and our work has resulted in five licensed medicines, including cancer drug pembrolizumab, and a diagnostic for antibiotic resistance.

Our teams are experts in drug and diagnostics discovery, technology transfer, and intellectual property. Our work is in translational science – bridging the gap between academic research and clinical development, providing funding, research and expert knowledge, all with a clear and unwavering commitment to having a positive impact on patient lives.

LifeArc is committed to spending £1.3 billion by 2030 in areas of high unmet medical need.