{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,23]],"date-time":"2026-09-23T06:11:24Z","timestamp":1790143884020,"version":"4.0.1"},"reference-count":44,"publisher":"Wiley","issue":"7","license":[{"start":{"date-parts":[[2026,8,23]],"date-time":"2026-08-23T00:00:00Z","timestamp":1787443200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2026,8,23]],"date-time":"2026-08-23T00:00:00Z","timestamp":1787443200000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/501100020884","name":"Agencia Nacional de Investigaci\u00f3n y Desarrollo","doi-asserted-by":"publisher","award":["11220775"],"award-info":[{"award-number":["11220775"]}],"id":[{"id":"10.13039\/501100020884","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Sociology Health &amp;amp; Illness"],"published-print":{"date-parts":[[2026,9]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:p>This article explores how rare diseases reveal the moral and epistemic foundations of healthcare systems. Based on narrative interviews with 11 Chilean patients and 10 professionals, this study shows how the absence of standardised protocols\u2014such as clinical guidelines, treatment pathways and referral standards\u2014exposes informal, discretionary and morally complex decision\u2010making processes. Contrary to the ideal of evidence\u2010based care, rare disease treatment often relies on personal networks, institutional gaps and improvisation. We frame rare diseases as epistemic objects, conditions that challenge classification systems and highlight the normative assumptions behind health decisions. Introducing the concept of decisional justice, we examine how health systems support (or fail to support) fair and accountable decision\u2010making. Patients become epistemic activists, whereas professionals navigate fragmented institutions with little guidance. Rare diseases act as diagnostic tools that expose structural inequities and the invisibility of certain conditions. They reveal how ignorance can translate into neglect, shifting responsibility to individuals and deepening disparities. We argue that healthcare systems are not only logistical but also moral infrastructures, shaping what can be known and acted upon. Thus, health justice must also involve moral recognition and epistemic inclusion, not just resource distribution.<\/jats:p>","DOI":"10.1111\/1467-9566.70255","type":"journal-article","created":{"date-parts":[[2026,8,24]],"date-time":"2026-08-24T04:01:11Z","timestamp":1787544071000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Rare Diseases as Epistemic Objects: Exploring the Moral Role of Health Systems"],"prefix":"10.1111","volume":"48","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0066-7190","authenticated-orcid":false,"given":"Nicol\u00e1s","family":"Sch\u00f6ngut\u2010Grollmus","sequence":"first","affiliation":[{"name":"N\u00facleo de Investigaci\u00f3n en Interacciones Sociales, Facultad de Salud y Ciencias Sociales Universidad de Las Am\u00e9ricas  Santiago Chile"},{"name":"Centro de Investigaci\u00f3n y Acci\u00f3n en Determinaci\u00f3n Social y Salud Mental CIADES\u2010CIN250054  Santiago Chile"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0059-0683","authenticated-orcid":false,"given":"Dolores","family":"Steverlynck","sequence":"additional","affiliation":[{"name":"Doctorado en Psicolog\u00eda Universidad Alberto Hurtado  Santiago Chile"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0145-6574","authenticated-orcid":false,"given":"Fernanda","family":"Manr\u00edquez\u2010Castillo","sequence":"additional","affiliation":[{"name":"Universidad Diego Portales  Santiago Chile"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1963-1569","authenticated-orcid":false,"given":"Sebasti\u00e1n","family":"Rojas\u2010Navarro","sequence":"additional","affiliation":[{"name":"Centro de Investigaci\u00f3n y Acci\u00f3n en Determinaci\u00f3n Social y Salud Mental CIADES\u2010CIN250054  Santiago Chile"},{"name":"Facultad de Ciencias Sociales 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