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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).

Description
Date
2025-11-01
Journal Title
Journal ISSN
Volume Title
Publisher
Policy Department for Transformation, Innovation and Health Directorate-General for Economy, Transformation and Industry
Chapter title
Publication type
Sci. report, recommendation, guidance doc., directive, monograph
Research Projects
Organizational Units
Journal Issue
Keywords
European Action Plan, patient experience, Rare diseases
Citation
Topic(s)
Orphan disease #22469#
Rare diseases #343#
Related project
Orphanet database #1000739#
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