34th EURORDIS Round Table of Companies WorkshopDigital Transformation as a Catalyst of Change for Rare Diseases
19 October 2022, Recinte Modernista, Barcelona
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 invite you to join us in building 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.
Proposed workshop objectives
Fill out the form below to register for the workshop
EURORDIS is organising a special dinner to celebrate its 25th anniversary on Tuesday, 18th October (the evening before the workshop).
The dinner will start at 19:15 and will take place at Alba Granados restaurant (https://g.page/restaurantealbagranados?share)
All workshop's attendees are invited to join the dinner.
As a EURORDIS volunteer, board or staff member, EURORDIS will cover your travel and accommodation expenses as follows: