RT info:eu-repo/semantics/article
T1 Socio-historical understanding of the institutionalization of rare diseases—analysis of Spanish policies in the European context
A1 R. Coca, Juan
A1 Plaza Gómez, Nicolás
A1 Paramá, Anabel
A1 Caramés-Vila, Noa
A1 Fernández-Vilas, Enrique
A1 Gómez-Redondo, Susana
A1 Rodríguez Sánchez, Juan Antonio
K1 Política social
K1 Salud pública
K1 Cambio y desarrollo socio-educativo
K1 Rare diseases
K1 Social policy
K1 Public health
K1 Institutionalization
K1 European policies
K1 6307.03 Política Social
K1 3212 Salud Publica
AB 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.
PB Springer nature
YR 2025
FD 2025
LK https://uvadoc.uva.es/handle/10324/84000
UL https://uvadoc.uva.es/handle/10324/84000
LA spa
NO 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
DS UVaDOC
RD 13-abr-2026