Source – LifeArc
LifeArc, a self-funded non-profit medical research organization and charity, has announced the launch of the Rare Disease Translational Challenge. This initiative aims to invest over £100 million by 2030 to enhance the lives of individuals affected by rare diseases.
The challenge will provide funding and support to researchers, focusing on developing new diagnostic technologies, advancing treatments, accelerating research, and overcoming existing barriers to better care.
Globally, it is estimated that over 300 million people live with a rare disease, with around 3.5 million affected in the UK alone. With over 7,000 identified rare diseases, there is a significant unmet need for innovative treatments and technologies.
An initial commitment of £40 million will be allocated to establish up to five Translational Rare Disease Centres in the UK, bringing together experts specializing in different aspects of rare disease research.
The challenge kicks off with a £2.5 million commitment in partnership with DEBRA Austria, inviting researchers focused on repurposing drugs to help treat Epidermolysis Bullosa (EB), a rare skin disease.
The Rare Disease Translational Challenge aims to foster collaboration between researchers in rare diseases and LifeArc’s expertise in translational science. Its primary focus is addressing the challenges faced by individuals living with rare diseases, including the lengthy diagnostic journey to access clinical trials.
Close collaboration with the rare disease research ecosystem, patients, their families, and patient groups will be essential for the success of this initiative.
LifeArc has previously launched programs such as the Neurodegenerative Translational Challenge, targeting conditions like motor neurone disease (MND) and dementia, and the Chronic Respiratory Infection Translational Challenge, which aims to improve care for individuals with conditions such as cystic fibrosis. They have also conducted a Global Health program focused on antimicrobial resistance and emerging viral threats.
“Through our Rare Disease Translational Challenge, 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.”
– Catriona Crombie, head of the Rare Disease Translational Challenge at Life Arc
“We’re delighted by LifeArc’s commitment to support early career researchers in the UK 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.”
– Louise Fish, chief executive of Genetic Alliance UK
“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. 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.”
– Dr Gail Marzetti, director of science, research, and evidence at UK Department of Health and Social Care
