Victoria HEDLEY

Victoria HEDLEY

Rare Disease Policy Manager Co-Lead of the Newcastle University Centre of Research Excellence in Rare Disease

Victoria is a Rare Disease Policy Manager at Newcastle University in the UK, and is co-lead and founder of the Newcastle University Centre of Research Excellence for Rare Disease. She has been an active participant in the generation of rare disease (RD) policies and policy-related outputs since 2012. She led the knowledge-base activities of the Rare 2030 foresight project and co-authored the final project recommendations. 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; Patient Registration and data collection; National Plans and Strategies; and, most prominently, European Reference Networks. She led RD-ACTION support for the conceptualisation and implementation of ERNs, and designed and delivered numerous key workshops to assist the ERNs in addressing shared policy challenges. For the past 6 years she led the resource on the ‘State of the Art of Rare Diseases Activities in Europe’.

On the research side, Victoria co-leads the data-related activities on conect4children and is a seed member of the GO-FAIR Implementation Network for RD. She also leads Newcastle’s contribution to the EJP RD and coordinates the RD-IMAG (UK-International Mirror 7 Action Group for RD Research). Victoria received the EURORDIS European Rare Disease Leadership Award in 2021.