£100M LifeArc program aims to help people living with rare diseases

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epidermolysis bullosa

LifeArc, a self-funded, non-profit medical research organization and charity, is launching a new program to invest more than £100 million ($127.2 million) by 2030 to deliver new breakthroughs to improve the lives of people living with a rare disease.

The Rare Disease Translational Challenge will bring together researchers in rare disease with LifeArc to get new developments to patients faster by providing funding, research and knowledge.

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

Melanie Lee, CEO of LifeArc, said: “LifeArc has been supporting rare disease research for a number of years, committing over £32 million ($40.7 million) since 2019, and I am thrilled to be launching our Rare Disease Translational Challenge today. 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.”

Rare Disease Centres

The first commitment will be £40 million ($50.9 million) for the creation of up to five Translational Rare Disease Centres across the U.K. 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.

The Rare Disease Translational Challenge is the latest program launched by LifeArc that aims to deliver new medical breakthroughs in areas of healthcare that have been neglected. Other programs include The Neurodegenerative Translational Challenge, which is focusing on conditions like motor neuron disease (MND) and dementia. The Chronic Respiratory Infection Translational Challenge aims to improve care for people living with conditions like cystic fibrosis, and the Global Health program is targeting anti-microbial resistance and emerging viral threats.

Karen Skinner, chief project and portfolio officer of LifeArc, said: “Our Translational Challenges are ambitious, collaborative research programs shaped by what patients tell us they need and designed to tackle complex health issues by taking the best scientific ideas out of the lab and helping to turn them into medical breakthroughs that can be life changing. The Rare Disease Translational Challenge will be a game-changer for people living with a rare disease.”

Catriona Crombie, head of rare disease translational challenge at Life Arc, added: “Through our Rare Disease Translational Challenge, we will leverage our expertise in drug discovery, diagnostics, and translational science. We will actively seek partnerships with other charities, academic institutions, industry, and patient advocacy groups, forming a network of dedicated individuals and organizations pursuing the same mission – to transform the lives of people living with a rare disease.”

Rare skin disease

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 (EB).

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

Louise Fish, chief executive of Genetic Alliance UK, said: “LifeArc’s investment of £40 million to establish and embed rare disease translational research centers has the potential to be life changing for the 3.5 million people in the U.K. living with rare conditions. We’re excited about this unique opportunity to accelerate the rate at which scientific breakthroughs in the lab can drive improvements in clinical practice and health policy.

“We’re delighted by LifeArc’s commitment to support early career researchers in the U.K. and help them establish careers in an area where there is so much unmet need and to make sure this amazing investment focuses on the areas that matter most to people living with rare conditions.”

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