This event is organized by EURORDIS, the non-profit alliance of over 1000 rare disease patient organisations from 74 countries. Orphanet, the international portal for rare diseases and orphan drugs, is co-organiser. Registration will open in December 2023.
The last edition of the ECRD followed a pivotal two-year Rare 2030 Foresight Study, supported by the European Parliament and European Commission, that guided a large-scale and multi-stakeholder reflection on rare disease policy in Europe through 2030.
The concluding recommendation of Rare2030 was the need for a new European policy framework on rare diseases with measurable and actionable goals. Current actions at Member State level alone, or legislative changes in specific areas are not enough. There is a need for a new European collective strategy for rare diseases to bring Member States’ commitment to rare diseases under a common umbrella and mark a step forward in the post-COVID world.
For further information, feel free to contact (Partnerships, Tech Transfer and Strategic Communications Officer - Orphanet · INSERM).