Rare Disease Policy Manager
Victoria Hedley is a Rare Disease Policy Manager at Newcastle University and has a broad role dealing with many health and research-related topics under the banner of ‘rare diseases’.
Victoria has been based in the John Walton Muscular Dystrophy Research Centre since 2012, working on projects and initiatives relevant to any and all rare diseases (by looking at what unites this heterogeneous group of 6-8000 conditions). She is a co-lead and founder of the NUCoRE for Rare Diseases.