Programme

This page is also available in:

Conference on "For an EU commitment to tackling rare diseases"

Draft programme

08.30 a.m. - 09.00 a.m. | Welcome coffee and registration

09.00 a.m. - 09.40 a.m. | Opening session

Moderator: Claude Rolin, EESC member

  • Baiba Miltoviča, President of the Section for Transport, Energy, Infrastructure and the Information Society, EESC
  • Péter Takács, State Secretary for Health, Hungary
  • Antonio Parenti, Director, DG SANTE, European Commission (video message)
  • Tomislav Sokol, Member of the European Parliament (video message)

09.40 a.m. - 11.20 a.m. | Session 1 - How to achieve a comprehensive European action plan on rare diseases by 2030?

Moderator: Donata Meroni, Head of Unit, Health Monitoring and Cooperation, DG SANTE, European Commission

Setting the scene

  • Ágnes Cser, EESC member: presentation of the EESC opinion Leaving No One Behind: European Commitment to Tackling Rare Diseases
  • Virginie Bros-Facer, Chief Executive Officer, EURORDIS
  • Haris Hajrulahovic, World Health Organisation Representative to Hungary

Discussion with the participation

  • María Fernández García, Deputy Director-General for Public Health and Quality, Health Ministry, Spain
  • György Pfliegler, Head of Division, University of Debrecen, Hungary, Member of the ERN Board of Member States (BoMS)
  • Till Voigtländer, Coordinator, Joint Action JARDIN
  • Luca Sangiorgi, ERN BOND Coordinator, Coordinator of the ERNs Coordinators Group
  • Mária Judit Molnár, Director, Institute of Genomic Medicine and Rare Disorders, Semmelweis University, Hungary 

Debate

11.20 a.m. - 01.00 p.m. | Session 2 - How can civil society and patient organisations join forces to improve the health and social situation of people living with rare diseases?

Moderator: Alain Coheur, EESC Rapporteur on Ensuring strong European solidarity for rare disease patients

  • Erika Borszékiné Cserháti, Érintettek Parents Association, Hungary
  • Daniel Theisen, Director, ALAN, Luxembourg 
  • Gábor Pogány, President, RIROSZ, National Association of People with Rare and Congenital Disorders, Hungary
  • Jean-Philippe Plançon, Vice-Chairman, Alliance Maladies Rares, France 
  • Lene Jensen, Chief Executive Officer, Rare Diseases Denmark
  • Annalisa Scopinaro, President, UNIAMO, Italy

Debate

01.00 p.m. - 02.00 p.m. | Lunch

02.00 p.m. - 03.30 p.m. | Session 3 - For a European Health Data Space – progress made and challenges ahead

Moderator: Lech Pilawski, EESC member

  • Bas Nijhuis, Health Counsellor, Permanent Representation of Netherlands to the EU
  • Tamás A. Kovács, Health Informatics Service and Development Centre, Hungary
  • Stefan Živković, National Organisation of Rare Diseases of Serbia
  • Hélène Dollfus, Coordinator of ERN-EYE
  • János Sándor, Head of the Institute of Public Health and Epidemiology, University of Debrecen, Hungary
  • Ana Rath, Director, Orphanet 

Debate

03.30 p.m. - 04.00 p.m. | Closing session

Next steps and commitment to change

Moderator: Enrique Terol García, Health Counsellor, Permanent Representation of Spain to the EU

  • Mónica García Gómez, Minister for Health, Spain (video message)
  • Judit Bidló, Deputy State Secretary for the Professional Management of Health, Hungary
  • Urszula Demkow, Undersecretary of State, Ministry of Health, Poland  
  • Ágnes Cser, EESC rapporteur

Interpretation requested from English, Hungarian, French and Polish into English, Hungarian and French