Victoria Hedley | Co-lead of the Newcastle Centre for Rare Disease
Newcastle University

Victoria is a Rare Disease Policy Manager at Newcastle University and a co-lead and founder of the Newcastle Centre for Rare Disease. She has been an active participant in the generation of rare disease (RD) policies and policy-related outputs since 2012. For instance, she led the knowledge-base activities of the Rare 2030 foresight project and co-authored the final project recommendations. She co-leads activity in ERDERA, the European RD Research Alliance, around linking national & international level via National Mirror Groups for RD, and runs the 'Resource on the State of the Art of RD Activities (SotAR)'.  She previously led the policy side of RD-ACTION, the EU Joint Action for RD (2015-18) and belonged to the coordination team for the EUCERD Joint Action for RD (2012-2015). In these capacities she contributed to the development of EU-level Recommendations around topics such as Cross-Border Genetic Testing; the Incorporation of RD into Social Services and Policies; Patient Registration and data collection; National Plans and Strategies; and, most prominently, European Reference Networks. In the UK, Victoria coordinates the RD-IMAG (UK-International Mirror & Action Group for RD), co-leads the coordination hub for Rare Disease Research UK, and is part of the LifeArc Centre for the Acceleration of Rare Disease Trials.