European Reference Networks (ERNs)

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

 Summaries of the 24 ERNs

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

Key Outputs of RD-ACTION: 

OUTPUT and LINK DESCRIPTION DATE PUBLISHED
Summary of RD-ACTION Support for ERNs (2015-17) Two-page overview summarising the main forms of RD-ACTION support for ERN implementation and cooperation around key policy priorities September 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 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

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