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 FAQs provide answers to some of the questions surrounding ERNs
- EJA/RD-Action prepared an Informal FAQs and Discussions on RD ERNs document based primarily upon the discussion sessions of its July 2015 workshop in Brussels, updated Jan 2016
- Of course, the official ERN webpages hosted by the European Commission should be the first stop for those wishing to learn more about/engage with the ERN process. Healthcare providers should contact their national representative on the Board of MS of ERNs if they wish to engage
The RD-Action Informal ERN ‘Matchmaker’
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 available here (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.)
Outputs of the Matchmaker resource
- A ‘Matchmaker’ Summary is now available: RD-ACTION-ERN-Matchmaker-Summary-Final (May)
- A summary of diseases proposed under each Thematic Group is available here: RD-Action Matchmaker – Summary of disease expertise recorded under each Thematic Grouping
- 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.
- A list of provisional RD ERN Coordinators (as of May 2016) and details of each proposal will be frequently updated.
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