Consensus-based guidelines for the provision of palliative and end-of-life care for people living with epidermolysis bullosa
为患有大疱性表皮松解症的患者提供姑息治疗和临终关怀的共识指南
期刊:Orphanet Journal of Rare Diseases
影响因子:3.5
doi:10.1186/s13023-023-02870-8
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