The two statements on ERNs integration into the national health systems and cooperation with industry adopted by the ERN Board of Member States, thus marking a significant step forward in the consolidation of the ERNs

The ERN Board of Member States adopted updated guidance principles to frame collaboration between the ERNs and the industry, through a revision of its 2016 statement on the matter. It also adopted a new statement concerning recommendations and good practices to foster integration of the ERNs in national healthcare systems. These important decisions were taken at the ERN Coordinators and Member State meetings that took place in Brussels on the 24 and 25 June. Finally, the Coordinators designated a new vice-Chair (Prof. Nicoline Hoogerbrugge, ERN GENTURIS), while Prof. Irene Mathijssen (ERN CRANIO) took over from Prof. Franz Schaefer (ERN ERKNET) as Chairperson.  

Via its revised statement on cooperation between the ERNs and the industry, the ERN Board of Member States has acknowledged the importance of collaboration between the ERNs and industry, especially in the field of research, whilst at the same time setting clear boundaries to ensure transparency and avoid conflict of interest. Where public funding is not available, sponsorship of single or joint projects or shared funding from more than one stakeholder will be allowed, except in this situation and for these areas: direct allocation of funds to activities related to the management and running of the networks, any type of activity relating to the development of diagnostic and clinical practice guidelines or any other clinical decision-supporting tools, to the development of outcome measures or to the establishment and maintenance of patient registries.

In order for the ERNs to reach their full coverage potential and offer fair access possibilities to all patients, they need to be linked in a clear and sustainable way to national healthcare systems. To support the action of Member States in this direction, the ERN Board of Member States approved an important statement which provides clear guidance and examples of good practices to encourage national authorities to put in place measures to integrate the ERNs in their national health systems. The statement covers five areas of intervention, and contains an annex with practical examples in the following areas: national rare disease plans/strategies and legal framework for ERN integration; patient care pathways; referral systems to the ERNs; support by Member States to ERN Coordinators, full members and affiliated partners; and information on ERNs provided at Member States level.

Member States and Coordinators also discussed the possibility of future enlargement of the networks, both in geographical terms and in terms of the range of diseases covered. The designation of affiliated partners, which it is hoped will open more “entrance doors” for patients and allow healthcare providers to be linked to the work of the (full) members, is currently ongoing. To date, 151 affiliated partners have been nominated from 10 countries (AT, EE, ES, HR, HU, IE, LV, MT, SI, NO), and more nominations are expected. A new call for ERN membership will be published after the summer and will enable new healthcare providers to join the existing networks. This call will also include new sets of diseases which are in the remit of the existing networks but which were not included in the previous call and are not officially covered.

Both meetings also allowed participants to discuss other important views such as monitoring, registries, IT tools, communication, the report of the Court of Auditors on cross-border healthcare, and financial support for the ERNs under the next Multiannual Financial Framework, in particular to fund digital transformation of care within the ERNs.