Patient journeys: A tool to help patients with rare endocrine diseases

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. This webinar is a presentation by the authors of the recently published paper of the same title.

Objectives of Endo-ERN Work Package 4 (ways to improve quality of care and patient view) Susan M Webb, IIB-Sant Pau, Research Center for Pituitary Diseases, Barcelona, Spain

What are Patient Journeys (PJ), its methodology, added value and clinical application Matt Bolz-Johnson, Health & Network Advisor, EURODIS
Lenja Wiehe, Patient Engagement Senior Manager, EURODIS

PREMs/PROMs and PJs in acromegaly Susan M Webb, IIB-Sant Pau, Research Center for Pituitary Diseases, Barcelona, Spain

PJ in Addison’s disease Jette Kristensen, Chair, Danish Addison Patient Association

PJ in congenital adrenal hyperplasia Anna Nordenström, Pediatric Endocrinology, Astrid Lindgren Children’s Hospital, Karolinska University Hospital, Stockholm, Sweden

How would a PJ helped me with my daughter? Diana Vitali, Chair SOD ITALIA – Italian Patients Organization for Septo Optic Dysplasia and other Neuroendocrine Conditions, Rome, Italy

Final comments: PJs: an instrument important for EURORDIS, Matt Bolz-Johnson & Lenja Wiehe
The voice of ePAGs, Jette Kristensen & Diana Vitali
Patient’s experience and opinions: a complement for optimal outcome, Susan Webb

 Q&A and close