Eva Bensasson

Eva's personal experience with rare genetic conditions began when her daughter’s whole-genome sequencing revealed ultra-rare variants in the AARS2 gene. This gene is part of the mtARS gene family (mitochondrial aminoacyl-tRNA synthetases), whose members produce enzymes that enable protein synthesis by attaching the correct amino acids to their corresponding transfer RNAs.

Navigating the complexities of genetic screening and diagnosis motivated Eva to support other families on similar journeys and to contribute to improving the patient experience. Her professional background spans both visual arts practice and web technologies, with a focus on user-centred design and accessibility. Outside of work, she has led community initiatives, organising projects to enhance shared green spaces and strengthen community connections. As a member of the Participant Panel, Eva is committed to using her skills and lived experience to advocate for families and help shape more inclusive, responsive and patient-centred genomic services.