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Articles, 2 registres trobats
Articles 2 registres trobats  
1.
9 p, 466.6 KB Patient journey experiences may contribute to improve healthcare for patients with rare endocrine diseases / Webb, S. M 1952- (Institut d'Investigació Biomèdica Sant Pau) ; Kristensen, Jette (ePAG & Chair of Danish Addison Patient Association) ; Nordenström, Anna (Pediatric Endocrinology) ; Vitali, Diana (ePAG & Chair SOD ITALIA - Italian Patients Organization for Septo Optic Dysplasia and other Neuroendocrine Conditions) ; Amodru, Vincent (Aix-Marseille Université) ; Wiehe, Lenja Katharina (EURORDIS - Rare Diseases Europe) ; Bolz-Johnson, Matt (EURORDIS - Rare Diseases Europe) ; Universitat Autònoma de Barcelona
Patient journeys are instruments developed by EURORDIS, The Voice of Rare Disease Patients in Europe, to collect patients' experiences; they may identify gaps and areas deserving improvement, as well as elements positively considered by affected persons. [...]
2022 - 10.1530/EC-22-0385
Endocrine Connections, Vol. 11 (october 2022)  
Registre complet - Creative Commons
2.
9 p, 817.8 KB Therapy options for adrenal insufficiency and recommendations for the management of adrenal crisis / Nowotny, Hanna (Klinikum der Universität München) ; Ahmed, S. Faisal (University of Glasgow) ; Bensing, Sophie (Karolinska University Hospital and Karolinska Institutet (Suècia)) ; Beun, Johan G. (AdrenalNET (Holanda)) ; Brösamle, Manuela (University Hospital of Würzburg) ; Claahsen van der Grinten, Hedi (Radboud University Medical Centre) ; Clemente, Maria (Hospital Universitari Vall d'Hebron. Institut de Recerca) ; Falhammar, Henrik (Karolinska University Hospital and Karolinska Institutet (Suècia)) ; Hahner, Stefanie (University Hospital of Würzburg) ; Husebye, Eystein Sverre (Haukeland University Hospital (Bergen, Noruega)) ; Kristensen, Jette (European Patient Advocacy Group for Adrenal Diseases (Holanda)) ; Loli, Paola (San Raffaele Vita-Salute University) ; Lajic, Svetlana (Karolinska University Hospital and Karolinska Institutet (Suècia)) ; Reisch, Nicole (Klinikum der Universität München) ; Universitat Autònoma de Barcelona
Adrenal insufficiency (AI) is a life-threatening condition requiring life-long glucocorticoid (GC) substitution therapy, as well as stress adaptation to prevent adrenal crises. The number of individuals with primary and secondary adrenal insufficiency in Europe is estimated to be 20-50/100. [...]
2021 - 10.1007/s12020-021-02649-6
Endocrine, march 2021, p. 1-9  
Registre complet - Creative Commons

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