The ‘Matchmaker’ process is designed to be user-friendly and straightforward:
Anyone interested in joining an RD ERN/establishing cross-talk with others in the same Thematic Grouping should click on the appropriate link below
The user will be directed to a Form which requests several few core details
Upon submission of this form, the data will be transmitted to the RD-Action team at Newcastle University, UK
At intervals of approximately 3 weeks a spreadsheet of the responses received for each Thematic Grouping will be emailed to all those submitting their data under that same Thematic Grouping
The onus is then on the specialists to use this information to make contact with one another, to continue to shape applications in each field, with the aim of encouraging collaboration and avoiding duplication
Please note that this process is informal and is entirely separate to the formal EC and MS activities around ERNs. Regrettably, RD-ACTION is not able to provide tailored support with ERN applications. Please also note that in each of these areas,coordinators have been establishedand proposals are quite advanced
! The Matchmaker will no longer accept new entries after 30th April; however, you will be able to find details of the Proposals here
This is a provisional list of the Healthcare Providers (HCPs) understood by the RD-ACTION team to be planning to coordinate the ERN in each Thematic Group.
Several important clarifications and caveats are necessary:
The purpose of this table is to facilitate transparency, cooperation and cross-talk between stakeholders planning to coordinate or join ERNs
Please note that this list is in no way connected to the formal European Commission application/evaluation/approval process for ERNs(official pages may be found here); rather, it represents the status quo regarding ERN proposals, based upon the RD-ACTION ERN ‘Matchmaker’.
The table does not claim to be exhaustive, or to constitute a definitive record of all ERN proposals in development. The list has been compiled based upon the information received through the RD-ACTION ‘Matchmaking’ resource; therefore, only HCPs which have utilised this resource and shared -and negotiated- their respective proposals via the communities of Matchmaker respondents appear below.
The Matchmaker Tool -and consequently the table- is built around the model espoused in the 2015 Addendum to the EUCERD Recommendations on RD ERNs which was adopted by the Commission Expert Group on Rare Diseases. The Joint Action supports the strategic guidance issues by the Board of Member States, which supports the CEGRD model and emphasises “the importance of developing ONE application per thematic grouping and not having competing applications under one grouping”.
Many – if not all- ERNs will arrange themselves into sub-domains at a more clinically-operational level. These sub-domains and their leads do not appear here; however, as overviews of each ERN proposal are received, they will be made accessible via the table below
The new Joint Action for Rare Diseases, RD-Action, continues the work of the previous Joint Action (EJA) to support the Rare Disease field in conceptualising, implementing, and evolving European Reference Networks (ERNs).
Resources and FAQs on ERNs
The formal, EC-approved FAQsprovide answers to some of the questions surrounding ERNs
To facilitate discussions and collaboration between specialists, RD-Action’s Policy WP launched an informal Rare Disease ERN ‘matchmaking’ exercise. This approach is based upon the Rare Disease Groupings promoted by the Commission Expert Group on RD in its Addendum to the 2013 EUCERD Recommendations. More details are availablehere (Please note that this process was informal and entirely separate to the formal EC and MS activities around ERNs. Regrettably, RD-ACTION is not able to provide tailored support with ERN applications.)
Please note that this list is not intended to be instructive – it simply demonstrates where a) the first 300 Matchmaker respondents initially placed their disease specialism, and b) the perspectives of EURORDIS patient organisation members.
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