How has RD-ACTION supported the conceptualisation and implementation of European Reference Networks?

Main Author – Victoria Hedley

Victoria Hedley is a rare disease policy expert with experience and understanding of a wide range of topics across the rare disease ‘spectrum’. As Thematic Coordinator and later Policy Manager for the Joint Action for Rare Diseases, RD-Action (2015-2018), she is 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 project-managed the EUCERD Joint Action (2012-2015), Victoria has contributed to the development of EUCERD and CEGRD (Commission Expert Group on Rare Diseases) Recommendations around 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. Victoria has led the Joint Action support for the conceptualisation and implementation of ERNs for the last two years, and is now overseeing RD-ACTION policy activities designed to assist the Networks in addressing shared challenges via common guidance and tools. Victoria also leads the Newcastle team generating the online resource for the State of the Art of Rare Diseases Activities in Europe and Chairs the RD-ACTION ‘Task-Force on Interoperable data-sharing within the framework of the operation of ERNs’, an internal RD & eHealth collaboration.

This poster was presented as part of the in .

Contact Victoria Hedley about this poster at

Additional authors

Victoria Hedley, Matt Boltz-Johnson, Valentina Bottarelli, Kate Bushby and Hannah Murray

RD-Action (‘Data and Policies for Rare Diseases’), like the EUCERD Joint Action before it, has played a key role in supporting the conceptualisation and implementation of European Reference Networks (ERNs). The Policy WP, led from Newcastle by Kate Bushby and Victoria Hedley, focussed many of its activities on the topic of ERNs, working to address specific issues such as how ERNs will: leverage eHealth solutions; share and re-use data; interact with patient registries; develop best practice guidelines; interact with Industry, regulatory bodies etc.; and conduct research. RD-ACTION supported the rare disease and specialised care field in organising itself into 24 comprehensive, robust ERNs. EURORDIS partners ensured meaningful, active patient involvement in each Network via the concept of ePAGs (European Patient Advisory Groups). Now that the Networks are in place, the goal of the RD-ACTION Policy WP workplan is to continue to provide support to the rare disease community in conceptualising, implementing and evolving robust ERNs capable of meeting the needs and expectations of people living and working with conditions requiring a specific concentration of expertise. As the ERNs are established and evolve, shared consensus guidance is important to support the Networks but also to ensure a baseline compatibility and interoperability (at various levels) between the ERNs. This poster demonstrates some of the key successes of RD-ACTION to-date, and illustrates the workshops planned in the coming year to support the Networks in addressing some of their common policy-related challenges.

The ERNs are co-funded by the
European Union (Health Programme and CEF)

EU Commission

“EURO-NMD is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Union (Health Programme and CEF).
For more information about the ERNs and the EU health strategy,
please visit