Socio-historical understanding of the institutionalization of rare diseases—analysis of Spanish policies in the European context

Juan R. Coca (), Nicolás Plaza Gómez, Anabel Paramá, Noa Caramés-Vila, Enrique Fernández-Vilas, Susana Gómez-Redondo and Juan Antonio Rodríguez Sánchez ()
Additional contact information
Juan R. Coca: University of Valladolid
Nicolás Plaza Gómez: University of Valladolid
Anabel Paramá: Universidad Isabel I de Castilla
Noa Caramés-Vila: Universidade de Vigo
Enrique Fernández-Vilas: University of Valladolid
Susana Gómez-Redondo: University of Valladolid
Juan Antonio Rodríguez Sánchez: University of Salamanca

Palgrave Communications, 2025, vol. 12, issue 1, 1-13

Abstract: Abstract 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.

Date: 2025
References: Add references at CitEc
Citations:

Downloads: (external link)
http://link.springer.com/10.1057/s41599-025-05597-y Abstract (text/html)
Access to full text is restricted to subscribers.

Related works:
This item may be available elsewhere in EconPapers: Search for items with the same title.

Export reference: BibTeX RIS (EndNote, ProCite, RefMan) HTML/Text

Persistent link: https://EconPapers.repec.org/RePEc:pal:palcom:v:12:y:2025:i:1:d:10.1057_s41599-025-05597-y

Ordering information: This journal article can be ordered from
https://www.nature.com/palcomms/about

DOI: 10.1057/s41599-025-05597-y

Access Statistics for this article

More articles in Palgrave Communications from Palgrave Macmillan
Bibliographic data for series maintained by Sonal Shukla () and Springer Nature Abstracting and Indexing ().