Institute of Genetic Medicine

Staff Profile

Victoria Hedley

Rare Disease Policy Manager


I am a Rare Disease Policy Manager at Newcastle University and have a broad role dealing with many health and research-related topics under the banner of 'rare diseases'. I have worked in the Institute of Genetic Medicine since 2012.    

As Thematic Coordinator and later Policy Manager for the European Joint Action for Rare Diseases, RD-Action (2015-2018), I was responsible for setting the strategic goals for the Policy & Integration work-stream, and delivering workshops, reports and recommendations across a broad range of topics. Having previously supported (and led, in the final year)  the project-management of the EUCERD Joint Action (2012-2015), I contributed to the development of EUCERD (EU Committee of Experts on Rare Diseases) and CEGRD (Commission Expert Group on Rare Diseases) Recommendations around diverse topics such as Cross-Border Genetic Testing for Rare Diseases; the Incorporation of Rare Diseases into Social Services and Policies; Patient Registration and data collection; National Plans and Strategies; and, most prominently, European Reference Networks (ERNs).
For the last three years, I led the Joint Action support for the conceptualisation and implementation of ERNs and oversaw many RD-ACTION policy-related activities –including over 8 key workshops- designed to assist the Networks in addressing shared challenges via common guidance and tools.

I currently lead the Newcastle team generating the online resource for the State of the Art of Rare Diseases Activities in Europe, collecting data and analysing the status quo of rare disease activities and policy frameworks within individual countries and across Europe. This work will be advanced through a new project entitled Rare2030, which will identify and rank determinants of health and wellbeing for rare diseases in Europe up to the year 2030 – the IGM (Victoria Hedley and Volker Straub) is a key partner in this work.   

I am interested in data and eHealth issues, from a strategic perspective; for instance, since 2015 I have Chaired the RD-ACTION-led ‘Task-Force on Interoperable data-sharing in rare disease and e-Health communities’, to explore synergies between these fields. I am also a founding member of the GO-FAIR Implementation Network for Rare Diseases and am currently leading the data-oriented activities of the new Conect4Children IMI2 venture, leading the activities around standardising terminology or paediatric clinical trials.


I was responsible for the coordination and delivery of policy outputs for the European Joint Action in the field of rare diseases (RD), ‘RD-Action’ as well as liaison (as appropriate) with the UK authorities (Department of Health, Public Health England and NHS England) with whom the Joint Action interacted.

I maintain an overview of progress across the thematic priorities relevant for RD, develop policy and research documents, manage stakeholder expectations, and integrate a diverse range of health-related initiatives t

Research topics are as follows:

•      European Reference Networks

•      E-Health and data sharing

•      Registries and Data Platforms

•      Centres of Expertise and healthcare pathways

•      Cross-border genetic testing/Next Generation Sequencing

•      Incorporation of research to healthcare sphere (for prevention, treatment and care).

•      Integration of rare diseases into Social Policies and Specialised Social Services

•      Coordinated approaches to pricing and innovative mechanisms to improve access to rare disease therapies, including HTA.

•      Methodology for assessing the Socio-economic Burden of Illness of rare disease

•      Public Health Indicators

•      Primary Prevention or rare congenital anomalies (in fact secondary and tertiary)