2026-05-05T19:21:47Zhttps://uvadoc.uva.es/oai/request

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

Socio-historical understanding of the institutionalization of rare diseases—analysis of Spanish policies in the European context R. Coca, Juan Plaza Gómez, Nicolás Paramá, Anabel Caramés-Vila, Noa Fernández-Vilas, Enrique Gómez-Redondo, Susana Rodríguez Sánchez, Juan Antonio Política social Salud pública Cambio y desarrollo socio-educativo 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. 2026-04-11T17:45:05Z 2026-04-11T17:45:05Z 2026-04-11T17:45:05Z 2025 info:eu-repo/semantics/article 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 spa https://www.nature.com/articles/s41599-025-05597-y info:eu-repo/semantics/openAccess http://creativecommons.org/licenses/by-nc-nd/4.0/ Attribution-NonCommercial-NoDerivatives 4.0 Internacional Springer nature