In December 2025, we were grateful and honoured to be invited by the Every Cure team for our Co-Founder and President, Barbara Yu, to speak on the panel “Exploring the Rare Disease Patient Perspective.”
The panel session featured talks from Prof. Sir Mark Caulfield (Queen Mary University of London and previously Chief Scientist for Genomics England), Dr. Rick Thompson (CEO, Beacon for Rare Diseases), and Emily Muller (Rare Disease Patient Advocate, One Young World). It was an insightful and inspiring session that brought together different perspectives on how to tackle rare diseases effectively.
Barbara shared our patient-centred approach to building an ecosystem to tackle citrin deficiency, one that may also be applicable to other rare diseases, spanning research, translational pathways, patient engagement, and support.
A heartfelt thank you to David Fajgenbaum, Alex Pampalone, and the entire Every Cure team for welcoming us and for their admirable efforts in AI-driven drug repurposing for rare diseases.
