{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,25]],"date-time":"2026-02-25T07:13:25Z","timestamp":1772003605513,"version":"3.50.1"},"reference-count":27,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2025,11,17]],"date-time":"2025-11-17T00:00:00Z","timestamp":1763337600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2025,11,17]],"date-time":"2025-11-17T00:00:00Z","timestamp":1763337600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100007064","name":"Universidad de Ja\u00e9n","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100007064","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["J Community Genet"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>\n                    Epidermolysis bullosa is a rare genetic disorder characterized by extreme mucocutaneous fragility. The healthcare coverage in Argentina is divided into the public sector, social security, and the private sector. This study examines how this segmentation affects the socio-healthcare management of patients with EB, identifying barriers and challenges. A descriptive phenomenological qualitative design was employed. The sample included 91 participants: parents of minors with EB (\n                    <jats:italic>n<\/jats:italic>\n                    \u2009=\u200954), adults with EB (\n                    <jats:italic>n<\/jats:italic>\n                    \u2009=\u200926), and socio-healthcare professionals (\n                    <jats:italic>n<\/jats:italic>\n                    \u2009=\u200911). Data were collected through semi-structured interviews and open-ended online surveys. A reflexive thematic analysis was conducted using ATLAS.ti software. Health system segmentation negatively impacts the care of individuals with EB, alongside other factors such as deficient interdisciplinary coordination, the lack of protocols for transitioning from pediatric to adult care, centralization and scarcity of specialized services, and significant disparities in access to wound-care products and treatments. Healthcare inequities exacerbate the vulnerability of individuals with EB and their families. The disparities in socio-healthcare access for individuals with EB in Argentina are closely linked to the segmentation of the healthcare system. While the National Program for Rare Diseases represents progress, there remains an urgent need to implement a national plan that ensures equitable access to treatment, interdisciplinary teams, and specialized training.\n                  <\/jats:p>","DOI":"10.1007\/s12687-025-00840-0","type":"journal-article","created":{"date-parts":[[2025,11,18]],"date-time":"2025-11-18T11:22:44Z","timestamp":1763464964000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["The segmentation of the Argentine healthcare system in the care of patients with epidermolysis bullosa: challenges and proposals for a comprehensive model"],"prefix":"10.1007","volume":"17","author":[{"ORCID":"https:\/\/orcid.org\/0009-0006-3394-8705","authenticated-orcid":false,"given":"Juan Manuel","family":"Mart\u00ednez-Ripoll","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2643-0100","authenticated-orcid":false,"given":"Yolanda","family":"de la Fuente Robles","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8597-5549","authenticated-orcid":false,"given":"Marta","family":"Garc\u00eda-Domingo","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2025,11,17]]},"reference":[{"key":"840_CR1","unstructured":"Acu\u00f1a CH, Chudnovsky M (2002) El sistema de salud en Argentina. Gobierno de Buenos Aires. http:\/\/estatico.buenosaires.gov.ar\/areas\/salud\/dircap\/mat\/matbiblio\/salud.pdf. Accessed 26 June 2024"},{"key":"840_CR2","first-page":"414","volume":"72","author":"HE Arce","year":"2012","unstructured":"Arce HE (2012) Organizaci\u00f3n y financiamiento Del sistema de Salud En La Argentina. Argentina Med (Buenos Aires) 72:414\u2013418","journal-title":"Argentina Med (Buenos Aires)"},{"key":"840_CR3","doi-asserted-by":"publisher","DOI":"10.1038\/s41572-020-0210-0","volume":"6","author":"A Bardhan","year":"2020","unstructured":"Bardhan A, Bruckner-Tuderman L, Chapple ILC, Fine JD, Harper N, Has C, Magin TM, Marinkovich MP, Marshall JF, McGrath JA, Mellerio JE, Polson R, Heagerty AH (2020) Epidermolysis bullosa. Nat Rev Dis Primers 6:78. https:\/\/doi.org\/10.1038\/s41572-020-0210-0","journal-title":"Nat Rev Dis Primers"},{"key":"840_CR4","first-page":"96","volume":"53","author":"M Bell\u00f3","year":"2011","unstructured":"Bell\u00f3 M, Becerril-Montekio V (2011) Sistema de Salud de Argentina. Salud Publica Mex 53:96\u2013109","journal-title":"Salud Publica Mex"},{"key":"840_CR5","doi-asserted-by":"publisher","first-page":"328","DOI":"10.1080\/14780887.2020.1769238","volume":"183","author":"V Braun","year":"2021","unstructured":"Braun V, Clarke V (2021) One size fits all? What counts as quality practice in (reflexive) thematic analysis? 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Springer, New York"},{"key":"840_CR10","doi-asserted-by":"publisher","first-page":"2349","DOI":"10.1111\/jdv.17629","volume":"35","author":"C Has","year":"2021","unstructured":"Has C, El Hachem M, Bu\u010dkov\u00e1 H, Fischer P, Friedov\u00e1 M, Greco C, Nevor\u00e1nkov\u00e1 P, Salavastru C, Mellerio JE, Zambruno G, Bodemer C (2021) Practical management of epidermolysis bullosa: consensus clinical position statement from the European reference network for rare skin diseases. J Eur Acad Dermatol Venereol 35:2349\u20132360. https:\/\/doi.org\/10.1111\/jdv.17629","journal-title":"J Eur Acad Dermatol Venereol"},{"key":"840_CR11","doi-asserted-by":"publisher","first-page":"138","DOI":"10.5688\/ajpe7120","volume":"84","author":"JL Johnson","year":"2020","unstructured":"Johnson JL, Adkins D, Chauvin S (2020) A review of the quality indicators of rigor in qualitative research. 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Approval was granted by the Human Research Ethics Committee (CEIH) of the University of Ja\u00e9n (DIC.22\/2. TES).","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Research involving human participants"}},{"value":"Informed consent was obtained from all individual participants included in the study.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}},{"value":"The participant has consented to the submission of the study to the journal.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to publish"}},{"value":"The authors declare no competing interests.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"7"}}