In-depth analysis of the public consultation of the European Parliament on rare diseases
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Abstract
Rare diseases affect an estimated 6-8% of the European Union population, meaning that between 27 and 36 million people in the EU will experience one at some point in their lives. This in-depth analysis presents the findings of the public consultation on rare diseases conducted by the European Parliament in March 2025. Contributions from a wide range of participants, including patients and families, patient support groups, healthcare professionals, stakeholder interest groups and international organisations, government and other public bodies, aim to guide future policy actions in the field of rare diseases. This document was provided by the Policy Department for Transformation, Innovation and Health at the request of the Committee on Public Health. Data analysis and report writing were carried out by Sciensano (Rare Diseases Team).
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Rare diseases #343#
