UK Charity LifeArc Launches $127 Million Program to Improve the Lives of People Living with a Rare Disease

Rare Dailly Staff

LifeArc, the self-funded, non-profit UK medical research organization and charity, is launching a new program that will look to invest more than £100 million ($127 million) by 2030 to deliver new breakthroughs to improve the lives of people living with a rare disease.

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 10,000 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.

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 commitment to having a positive impact on patient lives.

The Rare Disease Translational Challenge will be 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.

“LifeArc has been supporting rare disease research for a number of years, committing over £32 million ($40.7 million) since 2019, said Melanie Lee, CEO of LifeArc. “It represents a significant step forward in our commitment to advancing rare disease research and do our best to serve the millions of individuals and families affected by these often devastating conditions.”

The first commitment will be £40 million ($50.9 million) for the creation of up to five Translational Rare Disease Centers across the UK. These will bring together experts in the field that specialize in different aspects of rare disease research such as new diagnostic approaches and innovative treatments. These centers can help accelerate these discoveries so that patients and families living with a rare disease benefit sooner.

Among the first projects to receive funding through the Rare Disease Translational Challenge will be a £2.5 million ($3.2 million) commitment in partnership with DEBRA Austria to invite researchers aimed at re-purposing drugs to help treat the rare skin disease, epidermolysis bullosa.

Photo: Melanie Lee, CEO of LifeArc