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 policies and policy-related outputs since 2012. She previously led the policy side of RD-ACTION, the EU Joint Action for RD (2015-18). She has experience and understanding of a wide range of topics under the RD ‘umbrella’ 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; and European Reference Networks. She led RD-ACTION support for the conceptualisation and implementation of ERNs. She is part of several eHealth initiatives, including xPanDH. On the research side, Victoria’s activities include coordinating the RD-IMAG, co-leading the Hub for the new Rare Disease Research UK Platform, and supporting the Together4RD initiative as a consultant.