Skip to content
Generic filters
Exact matches only
Search in title
Search in content
Search in excerpt

34th Workshop of the EURORDIS Round Table of Companies (ERTC) – Digital Transformation as a Catalyst of Change for Rare Diseases

octubre 2023


Programme and Concept Note

Presentations & Final Report*

*This document is password protected.

Workshop description

EURORDIS has increasingly been advocating for the need to build a more resilient health data ecosystem that acknowledges the specificities of rare disease data and responds to the high unmet needs of our patient community.

A year ago, our workshop discussions already touched on the impact of health data on the regulation of medicines, in light of the fast developments of science, technology and data analytics. In our upcoming workshop, we will build the discussion further around health data access and sharing.

In the context of the European Commission’s proposal for a regulation on a European Health Data Space (EHDS), EURORDIS is actively reflecting on the opportunity this legislation represents to address the challenges and expectations of the rare disease community – both in terms of developing robust standards to ensure secure, ethical and responsible data sharing and allowing health data to be seamlessly shared across borders.

This legal act could become a game changer for digital transformation of healthcare in Europe. Not only will it empower people to access and share their health data in a common and safe space, it has also the potential to improve diagnosis, advance research and innovation in new medicines, support policy-making and regulatory activities, and reinforce healthcare delivery.


  • Explore the role of data and innovation in healthcare and rare diseases;
  • Deepen the understanding of the European Health Data Space Regulation and its link with the current legal system;
  • Reflect on the safe ways to strengthen and expand the reuse of health data for research and innovation purposes in the health sector within the context of the upcoming legislative changes;
  • Debate and gain new insights on technical and ethical issues in relation to health data sharing;
  • Gain practical knowledge on the EU decision-making and get acquainted with the positions of different stakeholders on digital healthcare transformation;
  • Have an opportunity to network, build connections and share perspectives and experience with other participants.

All participants are also invited to attend a Welcome Dinner the evening before the workshop.


Please send any other questions to Martina Bergna