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Consensus-based guidelines for the provision of palliative and end-of-life care for people living with epidermolysis bullosa.
Popenhagen, Mark P; Genovese, Paola; Blishen, Mo; Rajapakse, Dilini; Diem, Anja; King, Alex; Chan, Jennifer; Pellicer Arasa, Eduard; Baird, Simone; Ferreira da Rocha, Anna Carolina; Stitt, Gideon; Badger, Kellie; Zmazek, Vlasta; Ambreen, Faiza; Mackenzie, Caroline; Price, Harper; Roberts, Toni; Moore, Zena; Patton, Declan; Murphy, Paul; Mayre-Chilton, Kattya.
Afiliación
  • Popenhagen MP; Department of Anesthesiology B090, Children's Hospital Colorado, University of Colorado School of Medicine, Anschutz Medical Campus, 13123 E 16Th Ave, Aurora, CO, 80045, USA. Mark.Popenhagen@childrenscolorado.org.
  • Genovese P; Section of Pediatric Anesthesiology, Children's Hospital Colorado, Aurora, CO, USA. Mark.Popenhagen@childrenscolorado.org.
  • Blishen M; Phoenix Children's Hospital, Phoenix, AZ, USA.
  • Rajapakse D; DEBRA New Zealand, Newtown, Wellington, New Zealand.
  • Diem A; Great Ormond Street Hospital Trust, London, UK.
  • King A; EB House Austria, Department of Dermatology and Allergology, University Hospital of the Paracelsus Medical University, Salzburg, Austria.
  • Chan J; Human Sense, LLC, Phoenix, AZ, USA.
  • Pellicer Arasa E; Lucile Packard Children's Hospital, Stanford, Menlo Park, CA, USA.
  • Baird S; Sant Joan de Déu Barcelona Hospital, Barcelona, Spain.
  • Ferreira da Rocha AC; DEBRA Australia, Pittsworth, QLD, Australia.
  • Stitt G; , Melbourne, Australia.
  • Badger K; DEBRA Brazil, Blumenau, Santa Catarina, Brazil.
  • Zmazek V; , Santa Catarina, Brazil.
  • Ambreen F; Division of Clinical Pharmacology, University of Utah, Salt Lake City, UT, USA.
  • Mackenzie C; Phoenix Children's Hospital, Phoenix, AZ, USA.
  • Price H; DEBRA Croatia, Zagreb, Croatia.
  • Roberts T; , Zagreb, Croatia.
  • Moore Z; DEBRA Pakistan, Lahore, Punjab, Pakistan.
  • Patton D; , London, UK.
  • Murphy P; Guys and St Thomas' Foundation NHS Foundation Trust, EB Adult Service, East Hampshire, England, UK.
  • Mayre-Chilton K; Phoenix Children's Hospital, Phoenix, AZ, USA.
Orphanet J Rare Dis ; 18(1): 268, 2023 09 04.
Article en En | MEDLINE | ID: mdl-37667330
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Texto completo: 1 Base de datos: MEDLINE Asunto principal: Cuidados Paliativos / Cuidado Terminal / Epidermólisis Ampollosa Tipo de estudio: Guideline / Qualitative_research Límite: Humans Idioma: En Revista: Orphanet J Rare Dis Asunto de la revista: MEDICINA Año: 2023 Tipo del documento: Article País de afiliación: Estados Unidos
Texto completo
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Base de datos: MEDLINE Asunto principal: Cuidados Paliativos / Cuidado Terminal / Epidermólisis Ampollosa Tipo de estudio: Guideline / Qualitative_research Límite: Humans Idioma: En Revista: Orphanet J Rare Dis Asunto de la revista: MEDICINA Año: 2023 Tipo del documento: Article País de afiliación: Estados Unidos