Lucy is a rare disease advocate and volunteers as Chair of PCD Support UK. Born with a rare, multisystem disease called Primary Ciliary Dyskinesia (PCD), she is an ‘expert patient’ and is interested in issues of patient empowerment, transparency and accessibility.
Professionally, Lucy has worked in the education sector for several years both at the University of Oxford and across several UK state schools, where she supports marginalised and underrepresented students to access higher education.
In 2020, Lucy was awarded scholarships from the Snowdon Trust and Black Heart Foundation to study a Masters in Social Research with the University of York. She sits on the BEAT-PCD Clinical Research Collaboration Advisory Board, Genomics Partnerships Wales Patient and Public Sounding Board, and is a Public Contributor for the EVITE Immunity study (part of the National Core Studies Immunity Programme).