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We present the case of a female infant diagnosed shortly after birth with genetically confirmed severe JEB, whose family prioritized comfort\u2010focused care and memory\u2010making over life\u2010prolonging interventions. Her interdisciplinary care centered on symptom relief, bonding, and alignment with family values. This case underscores the importance of early diagnosis and values\u2010based decision\u2010making in managing rare, life\u2010limiting conditions like severe JEB.<\/jats:p>","DOI":"10.1111\/pde.70104","type":"journal-article","created":{"date-parts":[[2026,9,4]],"date-time":"2026-09-04T15:58:35Z","timestamp":1788537515000},"page":"93-99","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Severe Junctional Epidermolysis Bullosa: Honoring Parental Values in Pediatric Palliative Decision\u2010Making"],"prefix":"10.1111","volume":"43","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3467-6848","authenticated-orcid":false,"given":"Mark P.","family":"Popenhagen","sequence":"first","affiliation":[{"name":"Department of Anesthesiology University of Colorado School of Medicine  Aurora USA"},{"name":"Children's Hospital Colorado  Colorado Springs USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anna 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