The LifeArc Centre for Rare Respiratory Diseases celebrated its first anniversary with a landmark annual gathering in London. The gathering brought together researchers, clinicians and patient partners to share progress, spark collaboration and strengthen the vital link between scientific discovery and lived experience.
Opening remarks from LifeArc CEO Dr Sam Barrell set the tone for a day of discussion and inspiration. Sessions featured research updates, roundtable discussions on scientific and patient priorities, and personal reflections on what drives researchers to push boundaries in rare respiratory medicine.
“We’ve engaged in rich conversations about how to design biobanks, share data, use medical AI, and empower our researchers. I’ve brought in my own lived experience too, and felt heard. Lots of insights – lots of inspiration!”
Philippa Thomas, Lived Experience Advisory Panel Member and LAM Action Representative
Recognising Innovation and the importance of patient voices
The gathering highlighted achievements across the Centre, with poster prizes for early career researchers celebrating innovation and patient involvement:
Patient Voice Prize: Dr Jonathan Ong (University of Southampton) was recognised by patient representatives for a poster that was clear, impactful, and closely aligned with lived experience. His work on Primary Ciliary Dyskinesia (PCD), including creating a DNAH11 knockout model, will help us understand disease development and guide future treatments.
Technical Innovation Prize: Dr Sara Cuevas Ocaña (University of Cambridge) impressed judges with her work on models for Birt-Hogg-Dubé syndrome and familial idiopathic pulmonary fibrosis. Since joining the Centre in March, Sara has already developed three innovative models, demonstrating inspiring and impressive research.
Left: Patient Voice Prize winner Dr Jonathan Ong from the University of Southampton (middle), with judges (from left to right) Gill Hollis and Bradley Price (both on Lived Experience Advisory Panel), Kev Dhaliwal and Jane Lucas (on Centre Leadership Team). Right: Technical innovation prize winner Dr Sara Cuevas Ocaña from the University of Cambridge with judges
“It’s been a meeting of learning, inspiration and connection, recognising the importance of the patient voice.”
Clare Lyon, Lived Experience Advisory Panel, LAM Patient and LAM Action Representative.
Collaboration, engagement and shared understanding
Postdoctoral researchers and patient partners played a central role, leading sessions, presenting posters and connecting directly to each other through speed networking and interactive discussions. Themes of the day included the future of biobanks and long-term patient priorities, building shared understanding of model systems in disease research, and identifying opportunities to share best practice across the Centre.
There was also a focus on accelerating clinical trials and the importance of FAIR data – ensuring research data are easy to find, access, understand, and use by others. This makes research more transparent, efficient, and useful for everyone. This was led by Dr Chris Tomlinson who leads the UK Health Data & AI at the LifeArc Centre for Acceleration of Rare Disease Trials.
Looking ahead
The meeting underscored the Centre’s collaborative culture and commitment to ensuring patients remain at the heart of its mission.
As the Centre enters its second year, the symposium reflected both achievements to date and ambitions for the future. From cutting-edge research to the irreplaceable insights of patient partners, the event showcased the collective drive to transform the lives of people living with rare respiratory diseases.
A warm thank you goes to all speakers, chairs, judges, poster presenters and patient representatives who made the day a success.