Sophie has joined the Breaking Down Barriers team as Lived Experience Coordinator. She is passionate about health advocacy and science engagement, particularly with underrepresented groups, and believes that science and health should be accessible and inclusive to all.

Sophie’s interest in genetics stems from her own experience of living with both autoimmune conditions and a rare disease. Having faced first-hand the significant challenges rare disease patients encounter — from delayed diagnosis to continuity of care — she was inspired to study biology through the Open University. This enabled her to better understand her own condition and support others in similar situations. She later worked in public engagement for genetics research with the GRACE project and interned with The Economist’s Science section, where she reported on Women in Science Day and the UK Biobank’s whole genome sequencing project. Sophie is also a Patient Ambassador for Medics for Rare Diseases.

She is excited to contribute to the vital work of ASUK, supporting individuals with lived experience of Alström Syndrome and helping to overcome health inequities.