Remote public hearing on “Ensuring strong European solidarity for rare disease patients"

Remote event via Interactio, online platform - Thursday, 1 September 2022 from 09:30 a.m. to 1.00 p.m.

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

09.30 a.m. - 09.35 a.m. | Introduction

09.35 a.m. - 09.45 a.m. | Presentation of the opinion

09.45. a.m. - 10.30 a.m. | Panel I: The perspective of Patients' associations

(with break for the interpreters 15 minutes)

Moderator: Giulia Barbucci, member of the study group, EESC

  • Dorica Dan, President of the Romanian Prader Willi Association, of the Romanian National Alliance for Rare Diseases and of ePAG ITHACA
  • Simone Boselli, Public affairs Director, EURORDIS
  • Sylvie Maiella, International coordinator, INSERM (FR), National Institute of Health and Medical Research & Coordinator of the global Orphanet network


10.30 a.m. - 10.45 a.m. | Break

10.45 a.m. - 11.50 p.m. | Panel II: A political perspective

Moderator: Danko Relic, member of the study group, EESC

  • Jakub Dvořáček, Deputy Minister for Health, Czech Presidency
  • Martin Dorazil, DG SANTE- B3 Digital health, ERN, European Commission
  • Prof. Dr. Ildikó Horváth (HU), former Secretary of State for Health, Hungary


11.50 p.m. - 12.45 p.m. | Panel III: A health perspective

Moderator: Marie Zvolska, member of the Study Group, EESC

  • Bert Winnen, President of the Board of Chief Doctors —National Sickness Insurance and Invalidity Institute (INAMI)
  • Dr Monica Povedano, Head of the department of Neurophysiology in Bellvitge Hospital and Professor in postgraduate course in EMG and neuromuscular disorders, University of Barcelona, Spain
  • Irène Kesisoglou, Scientist on  the EHDS2 PILOT – Sciensano
  • Anne Hendrickx, Advisor, SOLIDARIS

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

  • Alain Coheur, Rapporteur of the EESC opinion

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

  • Antonio García Del Riego, President of the study group


Interpretation requested: participants can speak AND listen into: FR, EN, IT and ES (TBC) and can speak into BUT NOT listen to CZ, HU, LT, SK, BG and HR: (TBC)