{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T09:58:21Z","timestamp":1785491901314,"version":"3.56.0"},"reference-count":8,"publisher":"Oxford University Press (OUP)","issue":"4","license":[{"start":{"date-parts":[[2026,5,11]],"date-time":"2026-05-11T00:00:00Z","timestamp":1778457600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2026,7,31]]},"abstract":"<jats:p>This piece highlights the experience of a caregiver of a young person with cardiofaciocutaneous syndrome diagnosed with melanoma in situ. While the amount of scientific research on genodermatoses has increased since this patient\u2019s diagnosis, very little exploration of the patient and family experience exists in the literature. This manuscript, based on in-depth discussions with the patient\u2019s caregiver, underscores the importance of the physician\u2013patient relationship, specifically in rare disorders. While ultraspecialized care is undoubtedly important, this narrative argues that contextual knowledge and longstanding relationships can be equally impactful in delivering effective and compassionate care.<\/jats:p>","DOI":"10.1093\/skinhd\/vzag057","type":"journal-article","created":{"date-parts":[[2026,3,14]],"date-time":"2026-03-14T12:35:48Z","timestamp":1773491748000},"page":"643-644","source":"Crossref","is-referenced-by-count":0,"title":["Personalized care outweighs ultraspecialization: a caregiver\u2019s perspective on meaningful medicine in genodermatoses"],"prefix":"10.1093","volume":"6","author":[{"given":"Sabine L","family":"Abukhadra","sequence":"first","affiliation":[{"name":"Department of Dermatology, University of California Davis School of Medicine , Sacramento, CA ,","place":["USA"]},{"name":"Department of Dermatology, Wake Forest University School of Medicine , Winston-Salem, NC ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2026,5,11]]},"reference":[{"key":"2026073105085834000_vzag057-B1","doi-asserted-by":"crossref","first-page":"1032","DOI":"10.1016\/j.jaad.2011.04.031","article-title":"Guidelines of care for the management of primary cutaneous melanoma","volume":"65","author":"Bichakjian","year":"2011","journal-title":"J Am Acad Dermatol"},{"key":"2026073105085834000_vzag057-B2","doi-asserted-by":"crossref","first-page":"1753","DOI":"10.1007\/s00431-018-3237-4","article-title":"Needle-related pain and distress management during needle-related procedures in children with and without intellectual disability","volume":"177","author":"Pascolo","year":"2018","journal-title":"Eur J Pediatr"},{"key":"2026073105085834000_vzag057-B3","doi-asserted-by":"crossref","first-page":"87","DOI":"10.17245\/jdapm.2021.21.2.87","article-title":"Dental treatment under general anesthesia for patients with severe disabilities","volume":"21","author":"Choi","year":"2021","journal-title":"J Dent Anesth Pain Med"},{"key":"2026073105085834000_vzag057-B4","doi-asserted-by":"crossref","first-page":"2111","DOI":"10.3390\/genes14122111","article-title":"The cardiofaciocutaneous syndrome: from genetics to prognostic\u2013therapeutic implications","volume":"14","author":"Scorrano","year":"2023","journal-title":"Genes (Basel)"},{"key":"2026073105085834000_vzag057-B5","doi-asserted-by":"crossref","first-page":"1355277","DOI":"10.3389\/fped.2024.1355277","article-title":"Exploring the clinical complexity of cardio-facio-cutaneous syndrome: insights from a pediatric case series","volume":"12","author":"Ou","year":"2024","journal-title":"Front Pediatr"},{"key":"2026073105085834000_vzag057-B6","doi-asserted-by":"crossref","first-page":"282","DOI":"10.1159\/000331266","article-title":"RASopathies: clinical diagnosis in the first year of life","volume":"1","author":"Digilio","year":"2011","journal-title":"Mol Syndromol"},{"key":"2026073105085834000_vzag057-B7","doi-asserted-by":"crossref","first-page":"e1149","DOI":"10.1542\/peds.2013-3189","article-title":"Cardio-facio-cutaneous syndrome: clinical features, diagnosis, and management guidelines","volume":"134","author":"Pierpont","year":"2014","journal-title":"Pediatrics"},{"key":"2026073105085834000_vzag057-B8","doi-asserted-by":"crossref","first-page":"1091","DOI":"10.1016\/j.jaad.2020.01.038","article-title":"RAS pathway influences the number of melanocytic nevi in cardiofaciocutaneous and Costello syndromes","volume":"82","author":"Kiuru","year":"2020","journal-title":"J Am Acad Dermatol"}],"container-title":["Skin Health and Disease"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/skinhd\/article-pdf\/6\/4\/643\/68267740\/vzag057.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/skinhd\/article-pdf\/6\/4\/643\/68267740\/vzag057.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T09:09:02Z","timestamp":1785488942000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/skinhd\/article\/6\/4\/643\/8675856"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,5,11]]},"references-count":8,"journal-issue":{"issue":"4","published-online":{"date-parts":[[2026,5,11]]},"published-print":{"date-parts":[[2026,7,31]]}},"URL":"https:\/\/doi.org\/10.1093\/skinhd\/vzag057","relation":{},"ISSN":["2690-442X"],"issn-type":[{"value":"2690-442X","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2026,8]]},"published":{"date-parts":[[2026,5,11]]}}}