LifeArc Translational Centres for Rare Disease
Beacon is proud to be working with LifeArc, Genetic Alliance UK and the centres as part of the LifeArc Translational Centres for Rare Disease Hub.
At the end of 2024, the LifeArc Translational Centres for Rare Disease were launched to bring together the UK’s rare disease ecosystem with the aim of overcoming barriers to the development of new tests and treatments.
LifeArc has funded four “Centres”, each of which is formed of experts – researchers, doctors, students and people living with a rare disease – from different universities, hospitals and patient communities around the UK.
The Hub
The LifeArc Translational Centres for Rare Disease Hub brings together the expertise of Beacon for Rare Diseases, Genetic Alliance UK and LifeArc to unite the four Centres, supporting meaningful patient engagement, delivering targeted training, and influencing policy work. Together we will drive change and deliver impact for all people living with rare diseases.
Our role
Beacon, working with Genetic Alliance UK, is bringing our expertise in patient group engagement and empowerment to the Translational Centres for Rare Disease Hub.
We will be focusing on integrating the patient voice into the heart of the Centres, and ensuring this voice is continually heard and amplified throughout the project and beyond.
We’ll be using our experience in patient group training, our network of rare disease patient organisations, and our repurposing knowledge, to maximise the impact of this exciting project to the wider UK rare disease community.
