As the European pharmaceutical landscape evolves, initiatives like the PREVENTABLE project play a crucial role in shaping perspectives on legislative reforms. The PREVENTABLE project, focused on Rare Tumour Risk Syndromes (RTRS), provides a unique lens to understand proposed changes for healthcare professionals and patients to the European Union’s general pharmaceutical legislation. By examining the impact of legislative reforms on the prevention and management of rare diseases, particularly those with genetic predispositions to cancer, our explanatory note sheds light on the potential benefits of these reforms for patients, healthcare providers/clinical teams, patient associations and policymakers. In this explanatory note, the PREVENTABLE project provides highlights key considerations and opinions of healthcare providers and patient representatives on the proposed changes to the legislation.
Publication Date: 2026-06-23