4th Conference on European Reference Networks - ERNs in action

This ERNs conference

was held on the 21st and 22nd November in the European Commission, Brussels, with the participation of up 400 members and participants from the 24 ERNs: National authorities, healthcare providers members of the ERNs, health professionals, hospital managers, patients' representatives, EU Institutions – to share and discuss the results achieved so far and the challenges ahead.

ERN BOND presented 12 members, including the coordinator Luca Sangiorgi, and the patient representatives Inês Alves (Fundación ALPE) and Rebecca Stakberg (Norway).

Image 1. European Commission, Charlemagne Building

The 1 st Conference was back in 2014, in Brussels and was an exploratory and awareness raising event where the Commission gathered the community of all potentially interested actors. The 2 nd Conference took place in 2015, in Lisbon and was the process presentation, criteria, and timeline for setting the networks and identification and encouragement of the healthcare community to prepare network proposals. And the 3 rd Conference, was in 2017 in Vilnius and was ERNs implementation key moment: launching of the 24 successful network proposals.

Image 2. Commissioner Vytenis Andriukaitis in the roundtable "The EU political and institutional commitment to the ERNs"

The objectives of the 2018 conference were to mark that ERNs are entering the next stage of their lifecycle: the deployment phase; present the main clinical and organisational outcomes and success stories of the networks and consider the lessons learned and identify the main challenges, potential improvements and opportunities for the functioning and management of the networks and the way forward for the future of the ERN system.

ERNs aim to have a major impact in the access to diagnosis of rare diseases patients and ridging the ERNs with the National healthcare systems, cultural borders and linguistic barriers that block the building of trust between experts and new patients from other countries, not speaking the same language.

ERNs still need to show their work at a national level, to prove how important this European project is and the major impact it can have on patients lives. It was shown a video showcasing the example of Epicare network, for rare epilepsies.


Video 1. Showcase of the ERNs action - rare epilepsy. Click on the image to see the full video.

 Several debates were conducted, with the participation of all stakeholders, patients representatives were very active in discussing key themes.

This is the list of parallel sessions that happened:

  • PS1 - ERN Showcases 
  • PS2 - Quality assessment, monitoring and evaluation of the networks
  • PS3 - Epidemiological and Clinical Research and the data challenge
  • PS4 - Hospital's management and ERNs
  • PS5 - ERNs Sustainability
  • PS6 - Patient-Healthcare professional partnerships in ERNs: sharing successes and challenge
  • PS7 - Clinical guidelines and knowledge generation
  • PS8 - New medicaments and medical devices, clinical trials and stakeholders support


Image 3. Parallel session on New medicaments and medical devices, clinical trials and stakeholders support

Now, we all look forward to the Collaborative Platform (CPMS) that is the center of the ERNs can start to be used much more and more effectively towards delivering expertise to more patients. system.

Image 4 - Main image of the conference