Self-management and support services for patients with Adrenal Insufficiency

ESE would like to announce our involvement with a new 2-year project led by Dr Sofia Llahana aiming to evaluate factors that influence self-management for patients with Adrenal Insufficiency, and to develop an ESE Position Statement on “Self-management and support services for patients with Adrenal Insufficiency” under the auspices of the ESE Rare Diseases Committee and Endo-ERN.

This evidence-based ESE Position Statement will be informed by a mixed-methods research study involving a European cross-sectional survey (Phase 1) followed by a Delphi study to reach consensus on the Position Statement (Phase 2).

You are invited to participate as a Principal Investigator in recruiting patients with adrenal insufficiency from your centre or country, or as a Patient Advocacy Group representative to disseminate the survey to your members. You are also invited to participate in the Delphi study as an expert stakeholder in adrenal insufficiency.

Please see the attached flyer for additional details, and contact sofia.llahana@city.ac.uk if you are interested in getting involved in this project. Please also disseminate this initiative to your wider networks. The protocol of the larger ongoing study aiming to develop a self-management intervention for patients with adrenal insufficiency can be accessed via this publication.