The LifeArc program aims to help people living with rare diseases


LifeArc, a self-funded charity and not-for-profit medical research organization, launched a new program to invest more than £100 million ($127.2 million) by 2030 to provide new breakthroughs to improve the lives of people living with rare diseases.

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

Challenge will also seek to address some of the issues facing people living with rare diseases such as the time it takes to receive an accurate diagnosis – and gain access to clinical trials. This will be achieved by working closely 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 several years, committing over £32 million ($40.7 million) since 2019, and I am excited to launch our Rare Disease Translation Challenge today. This is a significant step forward in our commitment to advancing rare disease research and doing our best to serve the millions of individuals and families affected by these often devastating conditions.”

Center for Rare Diseases

The first commitment will be £40 million ($50.9 million) for the creation of up to five Translational Rare Disease Centres across the UK. It will bring together experts in the field specializing in various aspects of rare disease research such as new diagnostic approaches and innovative treatments. These centers can help accelerate this discovery so that patients and families living with rare diseases benefit more quickly.

The Rare Disease Translation Challenge is the latest program launched by LifeArc which aims to provide new medical breakthroughs in the neglected field of healthcare. Other programs include The Neurodegenerative Translational Challenge, which focuses on conditions such as motor neurone disease (MND) and dementia. The Translation Challenge of Chronic Respiratory Infection aims to improve care for people living with conditions such as cystic fibrosis, and the Global Health program targets antimicrobial resistance and emerging viral threats.

Karen Skinner, LifeArc project lead and portfolio officer, said: “Our Translation Challenge is an ambitious, collaborative research program shaped by what patients think they need and designed to tackle complex health problems by taking the best scientific ideas from the lab and helping turn them into medical breakthroughs that can change lives. The Rare Disease Translation Challenge will be a game changer for people living with rare diseases.”

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

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 aiming to reuse the drug to help treat a rare skin disease, epidermolysis bullosa ( EB ).

Globally, more than 300 million people are estimated to be living with rare diseases, with around 3.5 million people in the UK affected. With more than 7,000 identified rare diseases, new treatments and technologies are needed to speed diagnosis, help improve quality of life, and ultimately cure these diseases.

Louise Fish, chief executive of Genetic Alliance UK, said: “LifeArc’s £40 million investment to establish and implant a rare disease translational research center has the potential to change the lives of the 3.5 million people in the UK living with rare conditions. We are excited about this unique opportunity to accelerate the pace of scientific breakthroughs in the lab that can drive improvements in clinical practice and healthcare policy.

“We are delighted by LifeArc’s commitment to supporting early career researchers in the UK and helping them build careers in fields where there are so many unmet needs and to ensure this extraordinary investment focuses on the areas most important to people living with rare conditions. condition.”


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