Lived experiences of patients with calciphylaxis (CALCI-E): a qualitative study

This first in-depth thematic analysis of the experiences of patients who developed calciphylaxis identified key priorities: improved patient/clinician education, better pain and wound management, and enhanced psychosocial and peer support. These findings should inform clinical pathways, educational tools, and support services, with further co-produced research to assess their impact. The study highlights the value of the patients' voices, their willingness to engage, and the need for patient experience measures in calciphylaxis and other rare diseases.