blank
blank
Feb
09
2026

Victoria Hedley explains the role of National Mirror Groups in the rare disease research ecosystem

blank

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.

News & Updates

You might also be interested in

webinar series ERDERA

Introductory webinar: Situating ethics in the research continuum

July 24 @ 3:00 pm - 4:00 pm
This webinar will present a theoretical framework for situating ethics across research activities. The framework will then be brought to life through a relevant case study discussion, giving participants a concrete reference point for the episodes ahead.
State of the art rare disease country reports ERDERA

State of the art 2026 rare disease country report: Poland

This 2026 country report outlines the policy, research, care and support landscape for rare diseases in Poland.
NMG workshop 2026

ERDERA National Mirror Groups workshop: Creating, evolving and utilising national registries to advance rare disease research

Held in Riga on 9–10 June, the workshop brought National Mirror Group experts, researchers, clinicians and policymakers together to exchange practical lessons on how national rare disease registries can better support research and alignment across countries.
2

ERDERA launches Clinical Trial Call 2026 to advance early‑phase clinical trials for rare diseases

ERDERA (the European Rare Diseases Research Alliance) has opened its Clinical Trial Call to support multinational early-phase clinical trials in rare diseases. The call will fund studies designed to generate robust clinical evidence, strengthen regulatory readiness and make rare disease trials more feasible across countries.

ERDERA's

search form