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£100m LifeArc programme aims to help people living with rare diseases

By July 21, 2023No Comments

LifeArc, the self-funded, non-profit medical research organisation and charity, has launched a new programme that will look to invest more than £100 million by 2030 to deliver new breakthroughs to improve the lives of people living with a rare disease.

The groundbreaking Rare Disease Translational Challenge will bring together researchers in rare disease with the expertise LifeArc can offer in translational science – bridging the gap between academic research, getting new developments to patients faster by providing funding, research and expert knowledge, all with a clear and unwavering commitment to having a positive impact on patient lives.

The Rare Disease Translational Challenge marks a great leap forward in accelerating promising early-stage research in diagnostics, treatments and the re-purposing of drugs and getting them into clinical trials faster so patients can feel the benefits sooner.

The Challenge will also look to address some of the issues people living with a rare disease face such as ending the diagnostic odyssey – the time taken to receive an accurate diagnosis – and getting access to clinical trials. This will be achieved by working in close collaboration with the rare disease research ecosystem, patients and their families, patient groups and more.

The first commitment will be £40 million for the creation of up to five Translational Rare Disease Centres across the UK. These will bring together experts in the field that specialise in different aspects of rare disease research such as new diagnostic approaches and innovative treatments. These centres can help accelerate these discoveries so that patients and families living with a rare disease benefit sooner.

The Rare Disease Translational Challenge is the latest programme launched by LifeArc that aims to deliver new medical breakthroughs in areas of healthcare that have been neglected. Other programmes include the Global Health programme, which is targeting anti-microbial resistance and emerging viral threats.

Globally, more than 300 million people are thought to live with a rare disease, with approximately 3.5 million people in the UK affected, and with more than 7,000 rare diseases identified, there is a clear need for new treatments and innovative technologies that can speed up diagnosis, help improve quality of life and eventually cure these diseases.

Dr Gail Marzetti, Director of Science, Research and Evidence at UK Department of Health and Social Care, said“LifeArc’s significant investment in the Rare Disease Translational Challenge is a significant contribution to rare diseases research. Pioneering research is crucial for improving care and treatment for people living with rare diseases and is an underpinning theme of the UK Rare Diseases Framework.

In the 2023 England Rare Diseases Action Plan we highlighted our ongoing commitment to investment in rare disease research through the NIHR MRC Rare Disease Research Platform and renewed investment in the NIHR Biomedical Research Centres. We welcome LifeArc’s funding, which will complement our existing investments, and help further the UK’s position as world-leader in research into rare diseases for patient benefit.”