Programme

Public hearing on SOC/806 "Leaving No One Behind: European Commitment to Rare Diseases"

Hybrid event via interactio, EESC, Room VMA23, Tuesday, 12 July 2024 from 09.30 a.m. to 01.00 p.m.

In the framework of its work on the exploratory opinion requested by the Hungarian Presidency of the EU "Leaving No One Behind: European Commitment to Rare Diseases", the EESC is organising a public hearing, with the objective of gathering contributions from policy makers, civil society and patients' organisations and other relevant stakeholders, on the achievements and challenges at EU level and to identify possible ways to move forward.

The outcomes of the hearing will feed into the EESC's opinion.

09.00 a.m. - 09.30 a.m. | Testing connection

09.30 a.m. - 09.45 a.m. | Opening

  • Welcome by Lech Pilawski, Study group President
  • Introduction on the opinion by Ágnes Cser, Rapporteur

09.45 a.m. - 11.30 a.m. | Panel 1 - View from EU Institutions and Member States

Moderator: Claude Rolin, EESC member

  • Csaba Kontor, Health Attaché – EPSCO group leader, Permanent Representation of Hungary to the EU
  • Nichola Larkins, DG HEALTH, European Commission
  • Enrique Terol, Health Attaché, Permanent Representation of Spain to the EU
  • Fernando Muñoz, Secretary General for Digital Health and Innovation, Health Ministry, Spain
  • Marco Marsella, Director, Digital Health, DG SANTE, European Commission (tbc)

Q&A

11.30 a.m. - 11.50 a.m. | Coffee break

11.50 a.m. - 12.45 p.m. | Panel 2 - View of patients' organisations, industry and academia

Moderator: Lech Pilawski, Study group President

  • Valentina Bottarelli, Public Affairs Director, Head of European Advocacy, EURORDIS
  • Victoria Hedley, Rare Disease Policy Manager, Co-Lead of the Newcastle University Centre of Research Excellence in Rare Disease, UK
  • Gabriella Almberg, Global Head of Rare Disease Policy and Public Affairs, UCB, (tbc)
  • Anne Sophie Lapointe, Project Manager for Rare Diseases, French Ministry of Health and Prevention 

Q&A

12.45 p.m. - 12.55 p.m. | Conclusions

  • Ágnes Cser, Rapporteur

12.55 p.m. - 01.00 p.m. | Closing remarks

  • Lech Pilawski, Study group President