Hi, my name is Sophie and I’m delighted to have joined the Breaking Down Barriers team as Lived Experience Coordinator. I am passionate about health advocacy and science engagement, particularly with underrepresented groups. I believe that science and health should be accessible and inclusive.
My interest in genetics stems from my own experience of having both autoimmune conditions and a rare condition. I understand first-hand the hurdles rare disease patients go through, from delayed diagnosis to continuity of care. This inspired me to study biology through the Open University in order to better understand my condition and help others. I then worked in public engagement in genetics research with the GRACE project. Alongside, I also interned with The Economist’s Science section, reporting on Women in Science Day and the UK Biobank’s whole genome sequencing project. I am also a Patient Ambassador for Medics for Rare Diseases.
I look forward to contributing to the vital work that ASUK does to support those with lived experience of Alström Syndrome and overcoming health inequities.
