Support to European Reference Networks (ERNs)

RD-Action continued the work of the previous Joint Action (EJA) to support the Rare Disease field in conceptualizing, implementing, and evolving  European Reference Networks (ERNs).

Key Outputs relating to ERNs, 2015-2018: 

Summary of RD-ACTION Support for ERNs (2015-18) Four-page Overview summarising the main forms of RD-ACTION support for ERN implementation and cooperation around key policy priorities June 2018
New: Report on RD-ACTION Support to European Reference Networks One of the final project Deliverables, this Report summarizes the types of activity undertaken by RD-ACTION WP6 (led by Newcastle University) to support the conceptualization, implementation and evolution of ERNs. This report outlines hands-on support in identifying HCPs wishing to lead and join ERNs in the rare disease field;  explains the steps taken to build awareness of key issues of relevance to all Networks; and outlines the major workshops organised to help the ERNs add value in areas of strategic relevance for rare and specialized diseases September 2018
New: Conclusions and Next Steps from the workshop ‘How ERNs can provide added value in the area of clinical research’ This is the key output of the May 2017 workshop organised by RD-ACTION, EMA and DG SANTE, alongside the ERN WG on Research. This Report highlights the main discussion points and suggestions around each of the 4 debate topics for the workshop. Includes a table listing the numerous -and varied- Action Points/Next Steps emerging from the workshop discussions.


November 2018
Workshop Resources ‘How ERNs can provide added-value in the area of clinical research’ The dedicated webpage for our final workshop co-organised with the EMA and DG Sante, hosting the agenda, presentations, outputs and links to the recording of day 1. May 2018
Integrated & Holistic Care Workshop Output – Recap on Breakout Session Summary of the key discussions from the Workshop -co-organised with INNOVCare- on Integrated and Holistic Care for rare diseases, with proposals for ERNs and their component HealthCare Providers April 2018
Workshop Resources ‘Creating a Sustainable Environment for Holistic & Innovative Care for Rare Diseases & Complex Conditions’ The dedicated webpage for our workshop (12-13 Apr, 2018, Frambu, Norway) co-organised with INNOVCare, hosting the agenda, presentations and outputs April 2018
Workshop Resources ‘ERNs & Clinical Practice Guidelines’ The dedicated webpage for our Workshop (6-7 Dec 2017, Rome) co-organised with DG SANTE and the ERNs, hosting the agenda, presentations and outputs December 2017
Recommended Practices for Data Standardisation in the Context of the operation of ERNs Main Output from the Workshop 26-7th April 2017 on ‘Using Standards and Embedding Good Practices to Enable Interoperable Data-Sharing in ERNs’ September 2017
Workshop Resources & Outputs on ‘Indicators and Outcomes for ERNs’ The dedicated webpage for our Workshop (1-2 June, Newcastle) on Indicators and Outcomes for ERNs hosting the agendas, presentations and outputs.  June 2017
Tool-Kits on key resources, resulting from Workshop on Data & ERNs (April 2017) ‘Tool-Kits summarising where to find practical information on Orphanet Nomenclature; HPO ; FAIR Data; PPRL for rare diseaes June 2017
Workshop Resources & Outputs ‘Using Standards and Embedding Good Practices to Enable Interoperable Data-Sharing in ERNs’ The dedicated webpage for our Workshop co-hosted with DG SANTE, 26-27th April, hosting the agendas, presentations and outputs.  April 2017
RD-ACTION presentation – results of canvassing on ERNs and Research, Malta March 2017 PwP presentation summarizing results of canvassing exercise to gauge ERN priorities for translational research March 2017
Workshop Resources & Outputs ‘Exchanging Data for Virtual Care in the Framework of ERNs’ The dedicated webpage for our Workshop on 28-29 Sept 2016 in Brussels, hosting the agendas, presentations, Report and Highlights and Conclusions. February 2017
RD-ACTION analysis of the key issues regarding ERNs and Registries, Dec 2016 An internal analysis of some of the key overlaps and differences between registries and clinical datasets, in the context of ERNs December 2016
Webpage of Resources: Meeting between the ERNs and the Board of MS The official report of the first formal meeting of the Board of MS of ERNs and the ERN Coordinators (applicant, at the time) is available here: November 2016
eHealth & Interoperability Task-Force 1st-year-summary-and-next-steps-for-2017 This is the summary of the first year of operations of the TF on Interoperable data-sharing in the framework of the operations of ERNs – dedicated iTF pages (containing for instance the meeting and workshop reports) can be accessed here  October 2016
What do Coordinators require from an ERN ICT platform?: A policy support paper compiling responses from the ERN Coordinators and mapping these against the Published Tender Specs August 2016
RD-ACTION-ERN-Matchmaker-Summary-Final (May) Summary of the RD-ACTION informal Rare Disease ERN ‘matchmaking’ exercise May 2016
RD-Action Matchmaker – Summary of disease expertise recorded under each Thematic Grouping A summary of diseases proposed under each Thematic Group is available

An active Google Docs spreadsheet is in generation, to update this

April 2016

 Summaries of the 24 ERNs

The ERN Coordinators’ list is now available, along with details of the proposals

Meaningful Patient Involvement

As per the legal Acts and the Addendum to the Recommendations on RD ERNs, active patient involvement and patient-centeredness is essential in ERNs. EURORDIS has launched the EPAG (EURORDIS Patient Advisory Group) initiative to enable democratic patient representation – full details (and the names of appointed representatives) may be found here 


Resources and FAQs on ERNs