European Reference Networks

4th conference on European Reference Networks

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Brussels
21-22 November 2018

About the Conference

The 4th ERN Conference opened a new stage in the networks' lifecycle, namely the deployment phase. After an intensive period of preparatory actions and awareness raising , the first 24 ERNs are operational. While outcomes and success stories have already been delivered since their launch in March 2017, numerous aspects still needed to be considered to consolidate the work and results achieved so far. This conference intended to present the main clinical and organisational outcomes of the networks, as well as to identify the challenges and margins for future improvements.

This two-day event gathered more than 400 participants – 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.

The event proposed a series of plenary sessions addressing the state of play of the ERNs, the tools and resources for their deployment, the EU political and institutional commitment, as well as the challenges and the integration of the ERNs into the healthcare systems. Eight parallel sessions moreover focused on specific aspects: ERN showcases; Quality assessment, monitoring and evaluation of the networks; Epidemiological and Clinical Research and data challenges; Hospital's management and ERNs; ERNs Sustainability; Patient-Healthcare professional partnerships in ERNs; Clinical guidelines and knowledge generation; and New medicaments, medical devices, clinical trials & stakeholders support. The Belgian minister for health Maggie De Block officially opened the conference. Commissioner Vytenis Andriukaitis (Health & Food Safety) and, MEP Cristian-Silviu Buşoi and MEP Françoise Grossetête (video recording) presented and discussed the EU political and institutional commitment to the ERNs (plenary session III, 21st November).

More information and details

Communication products related to the ERNs:

Presentations and videos

Plenary: Round table I "State of play of the ERNs: setting up the system"

State of play of the ERNs

  • Andrzej Rys - Director, CoChair of the ERN Board of MS and of the coordinators group, DG SANTE
    PRESENTATION

Issues addressed and key support developments of the MS to the networks

  • Till Voigtländer - Austrian representative and chair of the ERN Board of Member States
    PRESENTATION

Key actions developed by the ERN-CG and the networks

  • Franz Schaefer - Co-Chair of the ERN coordinators group & coordinator of ERN ERKNet
    PRESENTATION

The role and the participation of patients representatives in the Networks

The role and support of the Hospital Managers

Plenary: Round table II "Tools and resources for deployment"

The ERN IT platform: How the ERN Clinical Patient Management System (CPMS) works

  • Ruth Ladenstein - Coordinator ERN Paedcan
    Caroline Paquier - Information Systems, DG SANTE
    PRESENTATION

Communication and raising awareness activities on ERNs

  • Roser Domenech - Head of Unit of Communication, DG SANTE
    PRESENTATION

Financing and supporting the networks

  • Stefan Schreck - Head of Unit, Health programme and chronic diseases, DG SANTE
    PRESENTATION

Plenary: Round table III "The EU political and institutional commitment to the ERNs"

  • EU Protects: How the EU connected experts to treat epilepsy
    VIDEO
  • Vytenis Andriukaitis - Commissioner for Health and Food Safety, European Commission
    PRESENTATION
  • European Parliament Cristian-Silviu Buşoi
  • European Parliament Françoise Grossetête
    VIDEO

Parallel Session 1 - ERN Showcases

Parallel Session 2 - Quality assessment, monitoring and evaluation of the networks

  • Michelle Battye - ERN eUROGEN
    PRESENTATION
  • Ruben Diaz - European Childrens Hospital’s Organisation (ECHO)
    PRESENTATION
  • Jason Gavin - Information Systems, DG SANTE
    PRESENTATION
  • Laura Marín Calvo - Ministry of Health, Consumer Affairs and Social Welfare, Spain
    PRESENTATION
  • Enrique Terol - European Reference Networks and Digital Health, DG SANTE
    PRESENTATION
  • Annalisa Trama - Joint Action on Rare Cancers
    PRESENTATION
  • Simon Oberst, Joint Action on Rare Cancers
    PRESENTATION

Parallel Session 3 - Epidemiological and Clinical Research and the data challenge

  • Iiro Eerola - DG RTD
    PRESENTATION
  • Anthony Brookes - University of Leicester, UK
    PRESENTATION
  • Sergi Beltran Agulló - Centre de Regulació Genòmica, Spain
    PRESENTATION
  • Gema Ariceta - Hospital Universitari Vall d’Hebron, Spain
    PRESENTATION
  • Simona Martin - Health, Consumers and Reference Materials, JRC
    PRESENTATION
  • Ana Rath - Orphanet/Inserm, France
    PRESENTATION
  • Olaf Horst Riess - University of Tübingen, Germany
    PRESENTATION

Plenary: Round table IV."ERNs' Main challenges for the future"

  • Helena Kääriäinen - Finnish representative at the ERN Board of Member States
    PRESENTATION
  • Pierre Fenaux - ERN EuroBloodNet coordinator
    PRESENTATION
  • Matt Boltz-Johnson - EURORDIS
    PRESENTATION
  • Ernst Kuipers - CEO Erasmus University Medical Centrum, The Netherlands
    PRESENTATION
  • Alberto M. Pereira - ERN ENDO coordinator
    PRESENTATION

Plenary: Round table V "The ERN integration in healthcare systems"

  • Birutė Tumienė - Lithuanian representative at the ERN Board of Member States
    PRESENTATION
  • Franz Schaefer - ERN ERKNet coordinator
    PRESENTATION
  • Laura Marín Calvo - Spanish representative at the ERN Board of Member States
    PRESENTATION

Parallel Session 4 - Hospital's management and ERNs

  • Eve Parier - Saint Louis Hospital, France
    PRESENTATION
  • Irene Mathijssen - ERN CRANIO coordinator
    PRESENTATION
  • José María Muñoz - University Hospital La Paz, Spain
    PRESENTATION
  • Jean-Yves Blay - ERN EURACAN coordinator
    PRESENTATION
  • Willy Spaan - CEO, Leiden University Medical Center, The Netherlands
    PRESENTATION

Parallel Session 5 - ERNs Sustainability

  • César Velasco Muñoz - European University Hospital Alliance
    PRESENTATION - VIDEO
  • Teresinha Evangelista - ERN EURO-NMD coordinator
    PRESENTATION
  • Donata Meroni - Consumer, Health, Agriculture and Food Executive Agency
    PRESENTATION
  • Niels Moth Christiansen - Danish Health Authority
    PRESENTATION

Parallel Session 6 - Patient-Healthcare professional partnerships in ERNs: sharing successes and challenges

  • Guillaume Jondeau, ERN VASCERN coordinator and Ines Hernando - EURORDIS
    PRESENTATION
  • Robert J. Damstra (health professional) and Natasha Assics (patients representative) - ERN VASCERN
    PRESENTATION
  • René Wijnen (health professional) and Graham Slates (patients representative) - ERN ERNICA
    PRESENTATION
  • Jill Clayton-Smith (health professional) and Janet Williams (patients representative) - ERN ITHICA
    PRESENTATION

Parallel Session 7 - Clinical guidelines and knowledge generation

  • György Pfliegler - Hungarian representative at the ERN Board of Member States
    PRESENTATION
  • Henriette Farkas - Medical doctor, Hungary
    PRESENTATION
  • Mariana Dates - Optimity Consultancy
    PRESENTATION
  • Ursula Plöckinger - Charité University, Germany
    PRESENTATION
  • Enrique Terol - European Reference Networks and Digital Health, DG SANTE
    PRESENTATION
  • Maurizio Scarpa - ERN MetabERN coordinator
    PRESENTATION

Parallel Session 8 - New medicines, medical technologies, clinical trials and stakeholders support

Video recording

Video recordings of the Conference are available hereafter:

21 November 2018

22 November 2018