The ERN Coordinators Group (ERN CG) Meeting was held in Brussels on 14-15 November 2019 and eUROGEN was represented by Prof Wout Feitz (eUROGEN Coordinator) and Michelle Battye (eUROGEN Centre Manager).
The headline news was the new call for healthcare providers to join existing ERNs. Coordinators noted the high volume of applications which represents a real success for the ERN initiative and the EC, whilst presenting some operational challenges in managing workload. Many ERNs will more than double in size as a result of the new call and the integration of Affiliated Partners. The ERNs look forward to working with the new members/partners and increasing their capacity to provide expert advice to other healthcare professionals across Europe who can ask for advice on their patients with a rare disease or complex condition.
Another hot topic was how the ERNs will complete the internal assessment of the applicants to the ERNs and how current ERNs can manage the disease area coverage of their current members. eUROGEN took some action points away from this meeting and offered to draft the guidance for the ERNs on these two topics with the aim that all 24 ERNs approach the tasks in a consistent way.
Overlapping disease areas which may be covered by more than one ERN were also discussed, with a presentation given by Ana Rath, Director of Orphanet. It was interesting to note that the main gap identified for eUROGEN was male infertility. In addition, the fields of psychology and gynaecology do not have ERNs.
The frequency of these meetings has now reduced to twice a year over 1.5 days instead of three meetings a year taking a day each. The European Commission’s report on the meeting can be found here and slides can be found here.