16 Sep 2026
The Real Story Collaboration
Initiated and coordinated by the Addison’s Disease Self-Help Group (ADSHG), the project brings together patients, healthcare professionals, researchers, patient support organisations, professional bodies and industry partners to explore real-world experiences of adrenal crisis prevention and treatment.
The group aims to identify gaps between national best-practice guidance and the experiences of patients and clinicians, with a particular focus on emergency hydrocortisone provision for the treatment of adrenal crisis, steroid emergency card implementation, access to emergency injection training, emergency injection kit provision, and the wider management of adrenal crisis across healthcare settings. Representatives meet quarterly (online) to review progress on the project’s initial objectives and to identify outstanding actions.
Through research, patient and clinician engagement, data collection and collaborative working, The Real Story seeks to drive practical improvements in patient safety, clinical outcomes and quality of life for people with all types of adrenal insufficiency, throughout the UK.
AMEND members with adrenal insufficiency have already taken part in a survey as part of this collaboration.
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