This week’s blog is written by our CEO, Rick Thompson.
He discusses our role in the new LifeArc Translational Centres for Rare Disease and how this £40 million investment has the potential to transform rare disease research in the UK.
Rick explains why Beacon is involved, how we’re ensuring the patient voices remain at the heart of the initiative, and what this means for the wider rare disease community.
At the back-end of 2024 you may have noticed the launch of a new initiative funded by LifeArc – the LifeArc Translational Centres for Rare Disease.
While this may sound like just another research investment, it is, in my opinion, a significant step for the rare disease community in the UK.
That’s why I was keen for Beacon to be able to find a way to engage and support it.
If you haven’t come across the term before, translational research focuses on taking research from the lab and turning it into something more practically useful in the “real world”.
In the case of rare diseases, that tends to mean developing a new medicine, test, device, or therapy that can help those living with a rare condition.
Translational research is notoriously hard – it is often termed the “valley of death” in research circles. Successful translational research relies not only on great science, but also expertise in regulation, product development, and business – not to mention a lot of funding.
This means that a lot of promising research that could benefit those people living with a rare condition fails to make the journey – it never reaches patients for clinical trials, let alone becomes available on the NHS. LifeArc have invested £40 million over the next five years to drive change.
They have 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.
Each of these centres is focused on a different challenge in rare diseases – three are disease area specific (kidney, respiratory, and mitochondrial disease being the lucky three), while the fourth supports the design and delivery of effective rare disease clinical trials.
Great for those conditions I hear you think, but why does this matter to me?
The LifeArc Translational Centres for Rare Disease represent a model for rare disease care and research in the UK. All of them are working to pool much of the expertise across the nation into a single unified network.
This has the potential to improve the knowledge and practice in any relevant condition but also encourage more conversation and learning across related rare diseases. The centres form a central hub for collaborations with industry and create a critical mass of expertise to deliver more clinical research, or to prepare the ecosystem for high quality translational science.
The hope is that they will provide a blueprint, showing how effective this way of working can be, inspiring other fields and other funders to follow suit.
Importantly, all four centres have patient groups within their teams. All four intend to conduct extensive activities with their patient communities to guide their work.
LifeArc have recognised the central role that patient groups play in instigating, supporting, and refining rare disease research, and have tried to ensure patient groups have a real stake in the project.
This is why Beacon got involved.
Alongside LifeArc and Genetic Alliance UK, Beacon will be supporting a central project hub.
We’ll be bringing our expertise in patient group engagement and empowerment to the project, focusing on integrating the patient voice into the heart of the rare disease Centres, and the programme more broadly. Using our experience in patient group training, our network of rare disease patient organisations, and our repurposing knowledge, we aim to maximise the impact of the Centres to the whole UK rare disease community.
This last point is vital. LifeArc, Beacon and Genetic Alliance UK want to make sure that this £40 million investment has an impact to all.
We’ll aim to highlight successes and learnings from the project for the next few years and hopefully find ways to develop a model capable of supporting more rare diseases in the future.
We’ve just been sinking our teeth into the project over the past few months, so watch this space for more updates and output over 2025. We’re excited to have a role in this project, and we hope we can help to make it as impactful and meaningful as possible for our patient group community.
Visit their website to learn more about the LifeArc Translational Centres for Rare Disease
Thank you for reading – we’re thrilled to share this collaboration with you! Stay tuned for updates on this partnership in our newsletters and across our social media channels.
