European Reference Networks: one step closer

In December 2016, the European Commission announced which fields of expertise will be covered by the newly established European Reference Networks (ERNs) for rare diseases. These will concentrate on treating particularly complex and rare diseases.

IW – 12/2016

One of the 23 ERNs is a network that focuses on the treatment of rare skin disorders. Other ERNs include those set up to find ways to treat rare cancers, rare bone disorders and rare metabolic disorders. 


The ERN Board of Member States used a selection procedure to determine which applicants from a group of highly specialised healthcare providers qualified to join one of the networks. 


Each network consists of at least 10 healthcare providers from at least 8 different Member States and will receive initial funding from the EU Health Programme. The money is intended to cover the costs of networking the members and creating internal organisational structures. It is expected that each network will start receiving patients by autumn 2017. In addition, experts will be able to communicate with one another via an IT platform that will be established in order to share knowledge about particularly serious cases.  

The ERNs are not intended to replace existing health structures in the Member States. Rather, the idea behind them is to create closer ties within Europe between leading experts and between highly-specialised healthcare providers. Ultimately, this provides patients with easier access to cross-border healthcare. 


It is still unclear how further funding of ERNs can be ensured because there are no legal rules for this. The EU Commission hopes that after initial funding has been used to set up the ERNs and establish internal organisational structures, the national healthcare systems will become the most important source of funding for the networks. 


Establishing ERNs is a requirement of the EU Directive on Patients' Rights in Cross-Border Healthcare (2011/24/EU) adopted in 2011. It stipulates that the European Commission shall support the Member States in the development of European Reference Networks. The procedure for establishing ERNs and the criteria that healthcare providers must fulfil are set out in a European Commission Implementing Decision (2014/287/EU).