European Reference Networks (ERNs)

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 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

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