Medical research organisation and charity LifeArc has announced the launch of a new programme that will invest more than £100m by 2030 in a bid to improve the lives of people living with a rare disease.
One in 17 people will be affected by a rare disease at some point in their lives, amounting to around 3.5 million people in the UK.
However, the lack of scientific knowledge and quality information on rare diseases often results in a delay in diagnosis as well as limited treatment and management options.
LifeArc said its ‘Rare Disease Translational Challenge’ will offer funding and support to researchers to help accelerate research, find new diagnostic technologies, develop new treatments, and remove some of the obstacles to receiving better care.
An initial £40m will go towards the creation of up to five ‘Translational Rare Disease Centres’ across the UK to “bring together experts in the field that specialise in different aspects of rare disease research such as new diagnostic approaches and innovative treatments”.
A £2.5m pledge in partnership with DEBRA Austria is also among the first projects to receive funding through the Challenge, inviting researchers focused on repurposing drugs to help treat the rare skin disease Epidermis Bullosa.
LifeArc’s chief executive officer, Melanie Lee, said: “[The programme] 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.”
Catriona Crombie, head of the Rare Disease Translational Challenge at LifeArc, 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 organisations pursuing the same mission – to transform the lives of people living with a rare disease.”
The launch comes just days after the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC) announced a joint investment of £14m to establish a platform aimed at overcoming some of the most common challenges in the diagnosis, management, and treatment of rare diseases.
The new UK Rare Disease Research Platform is set to bring together expertise from across the UK rare disease research system to foster new and innovative treatments for those directly and indirectly impacted by rare conditions.
