Lewi briefed National Press Foundation fellows in September 2021: Covering Rare Diseases with Sensitivity.

Daniel Lewi’s background in rare disease advocacy began when he and his wife founded the Cure & Action for Tay-Sachs (CATS) Foundation in the United Kingdom after their daughter Amélie was diagnosed with Tay-Sachs. With no national charities to provide support, the CATS Foundation has nonetheless proved instrumental in helping pharma develop treatments for Tay-Sachs and Sandhoff diseases, ranging from gene therapy programs to drug repurposing studies. Daniel has over ten years of experience in advocacy and also serves as the Chairman of the European Tay-Sachs and Sandhoff Charity Consortium since 2012. Alongside this experience, he also works in the Medtech industry for various organizations that are dedicated to improving the lives of those affected by rare diseases.

Daniel has a BSc (Hons) in Psychology and Sports Medicine from Liverpool John Moores University and an MSc in Applied Psychology from the University of Liverpool.