Victoria has spent the past 15 years contributing to the development of rare disease (RD) policies and policy‑related outputs, and is a founder and co‑lead of the Newcastle Centre for Rare Disease. Her current work includes leading activities within the European RD Research Alliance (ERDERA) to establish and mobilise National Mirror Groups for rare diseases; serving as co‑lead for the Coordinating Hub of the Rare Disease Research UK platform; and providing Newcastle University leadership for the Work Package on Impact, Regulation, and International Engagement within the LifeArc Centre for Acceleration of Rare Disease Trials.
In this video, Victoria Hedley explains the role of National Mirror Groups in the rare disease research ecosystem.