The European Commission has published a new fact sheet titled “EU Action on Rare Diseases: Improving patient access to knowledge, diagnosis and care.” This document contains key statistics on rare diseases in the EU, as well as an overview of the different actions currently undertaken by European institutions to support the rare disease community. It also briefly presents upcoming projects, such as the development of the European Health Data Space and the launch of a European Partnership on rare diseases. The fact sheet serves as a useful resource for those looking to orient themselves in the EU’s rare disease policy landscape before learning more about specific actions.
(source: OrphaNews 18 March 2024)