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).

Latest News and Resources: 

  • RD-ACTION compiled responses from the Applicant Network Coordinators, to establish a policy support paper: What do Coordinators require from an ERN ICT platform?:
  • On 28th September 2016, we organised a face-to-face meeting between the Applicant Network Coordinators and the Board of Member States of ERNs – find the agenda and report here
  • On 28-29th September, RD-ACTION organised a large workshop on Sharing Data for Virtual Care in ERNs – find out more and download the outputs here:

Outputs of RD-ACTION Matchmaker exercise and the ERN Applications

To facilitate discussions and collaboration between specialists, RD-Action’s Policy WP launched an informal Rare Disease ERN ‘matchmaking’ exercise in 2016. More details are available here

 

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

*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.