Currently working as Director for health systems, medical products and innovation in the Directorate-General for Health and Food Safety at the European Commission, Andrzej Rys is a medical doctor by background who specialised in radiology and public health and graduated from the Jagiellonian University, Krakow (Poland). Before joining the Commission in 2006, he was Founder and Director of the Centre for Innovation and Technology Transfer at Jagiellonian University. He was Deputy Minister of Health in Poland from 1999 to 2002 and member of the negotiation team for Poland's accession to the EU. He is currently Alternate Member of the European Medicines Agency (EMA) Board.

As DG SANTE's Director for Health systems, medical products and innovation, you have been supporting the ERNs since their creation. What is the added value of the ERNs from your point of view?

The ERNs were created to meet a precise need: enabling more patients affected by rare diseases in Europe to have access to a diagnosis and a treatment, and to reduce the time for them to get the right answers to their health concerns. As we all know, not only patients but also expertise is rare in this field, and no country alone has the capacity to address all cases of rare diseases. Together, the European Commission and the Member States have leveraged the best of what the European project can offer, by pooling knowledge and efforts in order to overcome national limitations in the field and maximise the results. This was done by enabling access to expertise located in other Member States, all on a virtual basis: it is the knowledge that travels, not the people. This has clear added-value for everyone: hospitals in countries with less expertise can take part in the European networks, where they strengthen their knowledge and at the same time enable their patients to be referred. Countries with more experience can transfer their knowledge, and benefit from the expertise of their peers in Europe on the most difficult cases. Patients have the possibility to access second opinion expertise and in general see the expertise in their own countries professionally enriched by this European exchange.

What are the capabilities and potential that can be further developed?

The ERNs are only two years old and are still in the consolidation phase. We are now working to extend the geographical coverage of the networks and the possibility for patients to have access to them, through their specialists, particularly in countries where membership is currently low. Member States are designating “Affiliated partners” which will act as “entrance doors” and will learn from the ERN members to enrich their own skills. A new call for membership will also be published after the summer to allow new members to join the existing networks. Member States are also being encouraged to integrate the ERNs into their national health systems, through adequate regulatory or legal measures when necessary, financial support, support to hospital managers, organisational measures etc. The situation is diverse in Europe and each Member State is entitled to address this aspect as it considers most appropriate. The purpose of this effort is to define clear patients pathways and referral procedures, so that the ERNs are clearly embedded in the national health systems and patients have a clear understanding of how and when they can benefit from the support of the ERNs.

You co-organised the meeting of the ERN hospital managers in Paris, which is the third of its kind since the launch of the ERNs. Why do you think the involvement and support of the hospital managers is so important for the development of the ERNs?

Hospital managers are a cornerstone of the whole ERN system. Only through their active support, particularly in terms of human resource management, will the specialists be able to dedicate part of their working time to the ERNs, either as a coordinator or as a member. Their involvement is also particularly relevant to help structure the way the ERNs are integrated into the national health systems: in countries where there is good cooperation between the coordinators, the hospital managers and the national authorities, we can see that the ERN system is better integrated in the national system. Their action is also particularly relevant to address some strategic aspects linked to organisational models, financing schemes, education and training modalities etc. If hospital managers are enabled to share common experiences and solutions to common problems, this will help to pool efforts and spread good practices.

This is the very first interview for the new “ERN newsletter”. What is the aim of this newsletter?

We see that the ERN community is growing, with several actors involved: the ERN coordinators and members, Member States, patient representatives, hospital managers and several external stakeholders which support ERN action. Each of these groups has specific communication tools to interact among themselves, but there is also a need for a cross-fertilising communication tool, where all ERN key players can have an overview of what is going on in the system and also learn from other contexts. This is in particular what the “Good practices” section aims to do: here, we want to showcase initiatives which can help inform and inspire other actors of the ERN community. Finally, we are seeing a growing interest from external audiences, and it is important to make the work the ERN community is carrying out visible and publically known. So, this newsletter is geared at both the internal ERN community and the wider public.