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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)  

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