At the end of last year, the LifeArc Translational Centres for Rare Disease were launched to bring together the UK’s rare disease ecosystem and in the hope of helping overcome barriers to 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 four centres are:
- The LifeArc Centre for Rare Respiratory Diseases
- LifeArc-Kidney Research UK Centre for Rare Kidney Diseases
- LifeArc Centre for Rare Mitochondrial Diseases
- LifeArc Centre for Acceleration of Rare Disease Trials
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.
Hear from our CEO, Dr Rick Thompson, on the opportunity to collaborate with LifeArc and Genetic Alliance UK on this project.
The LifeArc Translational Centres for Rare Disease represent a significant investment in the UK rare disease ecosystem. I’m personally excited to support this project, and to help ensure that the patient perspective is at the forefront of project development.
We are all keen to ensure that the work of the centres has a meaningful impact for all people living with rare diseases, irrespective of their condition, where they live, or where they are in their patient journey.
We’re excited to get started!
