Published on May 30, 2022

Tuesday June 21st -2022 from 17h -18h30

ERN-ITHACA Webinar #4: “How and why getting involved in ITHACA as an EPAG”


Welcome and Introduction, and get to know each other

  • Pr Laurence Faivre (Dijon Hospital, FR)
  • Mrs Dorica Dan (Chair Patient Council, RO)
  • Round table short presentation “Short pitch 1mn”

Patient engagement & Patient Advocacy

  • Eurordis a“win win” collaboration,  Mrs Dorica Dan (Chair Patient Council, RO)
  • Patient orientated action within ITHACA, and resources to rely on, Anne Hugon (APHP Paris, FR)
  • Teaching & Education a Work Group experience, Pr Laurence Faivre (Dijon Hospital, FR) 

Discussion time

How to improve my participation

  • An ePAG, shared history and experience, M. Ioel Detton (Patient Board Member, FR)
  • How I can be involve, Ammi Andersson (Patient Board Member,SE)
  • What should I spread at my level to inform our RD Community in EU, Gabor Pogany (CoChair Patient Council, HU)

Discussion time

Conclusion with speakers and moderator

Mrs Dorica Dan (Chair Patient Council, RO)

Pr Laurence Faivre (Dijon Hospital, FR)

Register and Connect

We would appreciate if you could fill out this form if you plan to participate:

Dead line to register June 17th

Connection details:

Meeting ID 880 1770 5353