One innovative funder, four collaborative centres
Our Centre is funded by LifeArc, a not-for-profit life science organisation that turns promising research into impact for people living with rare diseases and drug-resistant infections. In 2024, LifeArc invested £40 million to establish four virtual centres dedicated to translational research for rare disease.
About LifeArc
LifeArc works to break down the barriers that prevent scientific breakthroughs from becoming life-transforming treatments and cures. As a self-funded organisation, they focus on finding solutions to medical challenges that may be overlooked due to costs, complexities or their high-risk nature.
About the Translational Centres for Rare Disease
Each of the LifeArc Translational Centres for Rare Disease has a different focus but they share a common commitment to developing new tests, treatments and resources for people living with rare conditions. One centre focuses on rare kidney diseases, another focuses on rare mitochondrial diseases, and a third aims to accelerate rare disease trials. A central LifeArc Hub helps the centres to share expertise, exchange knowledge and drive positive change across the rare disease landscape.
About LifeArc’s partner charities
The LifeArc Translational Centres and LifeArc Hub work closely with two charities that specialise in rare diseases.
Beacon is a UK-based non-profit organisation that is building a united rare disease community with patient groups at its heart. It helps these patient organisations, which are often small and volunteer-led, to develop, grow and professionalise. It helps patient groups to connect and collaborate with others across the rare disease space.
Genetic Alliance UK is an alliance of more than 220 charities and support groups that are working together to improve the lives of people in the UK with genetic, rare and undiagnosed conditions. Within Genetic Alliance UK, SWAN UK is the UK’s only dedicated support community for families affected by a Syndrome Without A Name. This is a term used to refer to genetic conditions that are so rare that they often remain undiagnosed.
“Research inequity is a real challenge for rare diseases: we need more funding to understand why and how these conditions develop and identify better therapies and even cures.”
