2026-04-27T20:07:59Zhttps://uvadoc.uva.es/oai/request

oai:uvadoc.uva.es:10324/840002026-04-13T19:02:00Zcom_10324_971com_10324_931com_10324_894col_10324_972

R. Coca, Juan Plaza Gómez, Nicolás Paramá, Anabel Caramés-Vila, Noa Fernández-Vilas, Enrique Gómez-Redondo, Susana Rodríguez Sánchez, Juan Antonio 2026-04-11T17:45:05Z 2026-04-11T17:45:05Z 2025 Obregón, L. J., Coca, J. R., Rodríguez Higuera, C. J., & Gómez Redondo, S. (2025). Socio-historical understanding of the institutionalization of rare diseases: Analysis of Spanish policies in the European context. Humanities and Social Sciences Communications, 12, Article 5597. https://doi.org/10.1057/s41599-025-05597-y https://uvadoc.uva.es/handle/10324/84000 10.1057/s41599-025-05597-y 1 Humanities and Social Sciences Communications 12 2662-9992 The analysis of scientific policies on rare diseases provides insights into the evolving dynamics in health systems. This study aims to understand the growing importance of societal influence in the development of policy standards, particularly those related to rare diseases. Adopting a socio-historical approach, the research will examine the various processes of institutionalization in rare disease research. The objective is to gain an in-depth understanding of the institutionalization of rare diseases as a socio-biomedical phenomenon. From this perspective, this study will analyze the main actors involved in this process, along with paradigmatic regulatory examples in Europe and Spain. The research will take an interdisciplinary approach, addressing the social, historical and biomedical aspects as a whole, with a focus on key stakeholders. Identifying these stakeholders is of paramount importance to understanding how the health system is currently being transformed by associationism and the influence of these organizations on political forces. Spanish Ministry of Science, Innovation and Universities Proyectos de Generación de Conocimiento 2021. Non-Oriented Research Type B. PID2021-126019NB-I00 application/pdf spa Springer nature info:eu-repo/semantics/openAccess http://creativecommons.org/licenses/by-nc-nd/4.0/ Attribution-NonCommercial-NoDerivatives 4.0 Internacional Política social Salud pública Cambio y desarrollo socio-educativo Rare diseases Social policy Public health Institutionalization European policies 6307.03 Política Social 3212 Salud Publica Socio-historical understanding of the institutionalization of rare diseases—analysis of Spanish policies in the European context info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion https://www.nature.com/articles/s41599-025-05597-y SI