In this powerful episode of Rare Awareness Radio, we sit down with Dr. Felix Chan, Assistant Professor of Pharmacology at the University of Birmingham and a leading voice in rare epilepsy research. Dr. Chan shares his remarkable journey from Indonesia to the U.K. and U.S., and how a life-changing encounter with a patient during his Ph.D. sparked his mission to better understand the devastating impact of rare epilepsies like CRELD1.
We explore the multi-organ effects of this ultra-rare genetic condition, the importance of metabolic research in epilepsy, and how Dr. Chan’s lab is using patient-derived cell models, dietary approaches, drug repurposing, and even gene therapy to uncover new treatment possibilities.
More than just a researcher, Dr. Chan is a fierce advocate for patient engagement, public policy change, and international collaboration. He reminds us that rare disease research can unlock insights that benefit the entire medical community.
🔬 Topics covered include:
What makes CRELD1 so complex and urgent to study
The role of metabolism and nutrition in rare epilepsies
The importance of cross-disciplinary and global collaboration
Patient-led research and the UK’s PPIE (Patient and Public Involvement and Engagement) model
Advocacy and raising awareness with policymakers and scientists alike
🎧 Listen now to learn how one researcher’s global journey is helping to unlock hope for families around the world.
