Programme

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08:30 – 09:00     Registration  

09:00 - 09:15      Welcoming remarks

  • Stella Kyriakides, European Commissioner for Health and Food Safety (video message) 
  • Johannes Rauch, Austrian Minister of Health – (video message) 

09:15 – 10:00     Opening session

Moderator: Baiba Miltoviča, President of the Section for Transport, Energy, Infrastructure and the Information Society, EESC

Keynote speeches:

  • Oliver Röpke, EESC President
  • Sandra Gallina, Director-General for Health and Food Safety, European Commission
  • Sabine Stordeur, Director-General for Healthcare, Ministry of Health, Belgium
  • Irene Norstedt, Director for People: Health and Society, Directorate-General for Research and Innovation, European Commission

10:00 – 11:15     Session 1 – Setting the scene for integration

Moderator:  Philippe Roux, Director for Public Health, Cancer and Health Security, Directorate-General for Health and Food Safety, European Commission

  • Till Voigtländer, JARDIN Coordination – Joint Action JARDIN
  • Holm Graessner, ERN-CG – The European Reference Networks
  • Cornelia Blaschke, Germany, Ministry of Health - National investment and added European value
  • Marcin Jedrychowski, Hospital manager, Poland – The value of ERN integration for (participating) hospitals
  • Ines Hernando, EURORDIS – The patients’ perspective and expectations: a reference to Rare 2030
  • Alain Coheur, EESC member – The role of civil society: EESC's advocacy role

Debate

11:15 – 11:45    Coffee break

11:45 – 13:00     Session 2 – National best practices for ERN integration and how to learn from it

Moderator: Birute Tumiene, Chair of the Board of Member States of the European Reference Networks, Lithuania

  • Anne-Sophie Lapointe, France
  • Pavla Dolezalova, Czech Republic
  • Enrique Terol, Spain - National Network of Centres of Expertise (CSUR): recent advances 
  • Carla Pereira, Portugal

Debate

13:00 – 14:30     Lunch break

14:30 – 15:45     Session 3 –The way ahead

Moderator: András Edelényi, EESC member 

  • Alberto Pereira, Endo-ERN Coordinator - ERDERA - Research funding: opportunities for ERNs
  • Martin Dorazil, Deputy Head of Unit, DG SANTE C.1 "Digital Health", Directorate-General for Health and Food Safety, European Commission - European Health Data Space: Supporting ERN integration 
  • Izabela Taborska, Legal and Policy Officer, DG SANTE D.1 "Medicines: Policy, Authorisation and Monitoring", Directorate-General for Health and Food Safety, European Commission - Pharmaceutical Reform for unmet needs (new approach of orphan drugs)
  • Maurizio Scarpa, Coordinator of the European Reference Network for Hereditary Metabolic Diseases (MetabERN) - The role of patients’ registries

Debate

15:45 – 16:00     Closing remarks

  • Angelo Marino, Head of Department, HaDEA
  • Csaba Kontor, health attaché, Hungarian Permanent Representation to the EU 
  • Cinzia Del Rio, President of the Section for Social Affairs, Employment and Citizenship, EESC

Interpretation will be provided from/into EN/FR/DE