Haifa Rahabi, Maria Givony, Béatrice Demaret, Frédérique Albarel, Marie-Reine Aubron, Beate Bartès, Lucie Bernard, Hendy Abdoul, Naim Bouazza, Philippe Brun, Delphine Drui, Véronique Dujardin, Catherine Lançon, Sabine Malivoir, Irène Netchine, Bénédicte Perrotin, Virginie Picard, Rachel Reynaud, Murielle Ribeiro, Véronique Tardy Guidollet, Amélie Victor, Jérôme Bertherat, Claudine Colin, Thierry Brue
CONTEXT: Diagnosis announcement of a chronic disease is a crucial moment for patients as well as for their families and an important step in the management of severe conditions such as rare endocrine diseases. Little is known of how diagnosis is communicated to patients and families. The FIRENDO network was created by the third French Plan for Rare Diseases, to promote autonomy, care and research on rare endocrine diseases. OBJECTIVES: The aim of this study was to characterize, for the first time, the experience and needs of patients and/or their parents around the announcement of diagnosis to ensure optimal quality of care...
November 9, 2023: Annales D'endocrinologie