Patient passports and vulnerability: Disjunctures in health policy instruments for people with rare diseases

Małgorzata Rajtar

Social Science & Medicine, 2025, vol. 366, issue C

Abstract: Rare diseases have had a special status within European Union (EU) health policy since the late 1990s. According to key EU legal documents, rare disease patients are entitled to the same good quality care as others. These individuals are particularly vulnerable due to the “low prevalence” and “uniqueness” of their disease. To ensure that patients with rare disorders in Europe can access high-quality care in their respective countries, the Council of the European Union (2009) recommended that member states adopt plans or strategies for rare diseases. Poland adopted its first Plan for Rare Diseases in 2021.

Keywords: Rare diseases; Vulnerability; Patient passport; Health policy; Disjuncture; Health globalization; Europe (search for similar items in EconPapers)
Date: 2025
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DOI: 10.1016/j.socscimed.2024.117642

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