question: BACKGROUND: Anti-neutrophil cytoplasmic antibody-associated vasculitis is a rare chronic autoimmune organ- and life-threatening disease primarily affecting kidneys and lungs. The clinical symptoms of the disease vary considerably, and patients may display varied symptoms. Healthcare professionals believe that the patients are well informed about their disease and symptoms of relapse. However, some patients contact the Department later than expected after the debut of symptoms of relapse. AIM: To investigate patients' experiences of informational needs living with anti-neutrophil cytoplasmic antibody-associated vasculitis. DESIGN: Individual semi-structured interviews by telephone due to the COVID-19 pandemic. Data were analysed through systematic text condensation. The Consolidated Criteria for Reporting Qualitative Research checklist was used. PARTICIPANTS: Ten patients were diagnosed with anti-neutrophil cytoplasmic antibodies-associated vasculitis. APPROACH: A qualitative study. FINDINGS: We identified five themes: 'Need oral and written information in a combination', 'Need information about living with the disease', 'Need information about symptoms and indications of relapse', 'Need psychological support to receive information about the disease' and 'Need a peer for sharing information'. CONCLUSION: To increase patients' self-management skills, healthcare professionals should focus on three areas of information: 'Provision of information', 'Content of the information' and 'Learning prerequisites'. This study indicates that patients have an increased need for more and clear information about the disease as well as psychological support to react accurately to symptoms that may lead to relapse. Most of the patients had limited knowledge, which indicates that patients need a better understanding of their disease, symptoms and relapse.