ERN Coordination Group Meeting

The ERN Coordinators Group (ERN CG) met with the European Commission on 27 November 2020 with a very full agenda.  We strongly recommend that network members look at the documents and presentations for the meeting (ECP > Library > ERN Coordinators Group > Meetings).

The increased budget for the EU4Health programme, which will be financing the ERNs in the future, was discussed and the EC confirmed an increase in the funding available for the ERNs due to the enlargement of the networks.

Other topics on the agenda were:

• New call for members – ERN assessment of the applicants has finished, and the Independent Assessment Body is now examining the applications. New members expected to be confirmed in June 2021.
• ERN CG protocol for managing new disease areas within existing networks – the document (drafted initially by ERN eUROGEN for the Monitoring Working Group) is expected to be agreed and implemented after the new members join next year
• Discussion on EC proposal to create three new ERNs – infectious diseases, mental health disorders and obstetrics and gynaecology.
• Termination of HCP membership – this document is still under consultation between the EC and the Coordinators. The EC want to link membership with some KPIs e.g., CPMS use.
• EC presentation on the latest analysis of the data collection for the ERN monitoring process – overall the data shows 1.6 million patients with a rare or complex condition are under the care of the ERN HCPs. Educational activity is also showing an increase.
• Top 5 requests for CPMS improvements – presented by the Coordinators and the EC explained how they would be addressed. A clear EC priority for the future is to increase CPMS use.
• Also on the agenda – European Health Data Space, the ERN Academy, the ERN mobility programme and Brexit.

If you have any questions or if there is anything that is not clear, please get in touch with the Coordination Team who are always happy to explain.