We were delighted to host the LifeArc Centre for the Acceleration of Rare Disease Trials Annual Internal Meeting 2025 at Queen’s University Belfast this December.
Over two inspiring days, consortium colleagues from across academia, healthcare, industry, funders, and patient communities, together with our Lived Experience Advisory Panel (LEAP) members, came together to focus on a shared mission: accelerating rare disease trials through collaboration, innovation, and meaningful partnership with lived experience, and to share updates and progress across the LifeArc Centre.
Day 1 centred on co-creating research, with rich discussions on embedding Patient and Public Involvement & Engagement (PPIE) at the heart of translational research and training. Contributions from our Lived Experience Advisory Panel (LEAP) were a powerful reminder that impactful research must be shaped with, not just for, people living with rare conditions.
Day 2 highlighted progress across the LifeArc Centre, exploring practical solutions to accelerate trial design and delivery, strengthening four-nations data and digital infrastructure, and aligning emerging trials to ensure readiness across the UK. The open and constructive dialogue reinforced the value of working across institutions, disciplines, and nations to overcome shared challenges in rare disease research.
As hosts, we were proud to facilitate conversations that were collaborative, solutions-focused, and forward-looking. Thank you to all our speakers, partners, and attendees for your engagement, insight, and commitment — and to LifeArc for its continued support and leadership.
We look forward to building on this momentum together in the year ahead.
