"We are ambassadors, we are advocates": rare disease patient advocacy groups as knowledge brokers across health and social systems-a qualitative study from Poland.

WHY IT MATTERS

If you have a rare disease, this research validates that patient-led advocacy groups are essential resources for getting accurate information and support when healthcare systems and professionals lack rare disease knowledge.

This study looked at how patient groups led by people with rare diseases help fill gaps in education and awareness in Poland. Researchers interviewed 11 leaders of these patient groups to understand how they act as 'ambassadors' and 'advocates' to teach doctors, teachers, and the public about rare diseases. The findings show that patient advocacy groups play an important but often overlooked role in helping people understand and navigate rare diseases.

"We are ambassadors, we are advocates": rare disease patient advocacy groups as knowledge brokers across health and social systems-a qualitative study from Poland. Abstract: Rare diseases (RDs) pose a significant public health concern, particularly in Poland, where awareness among healthcare professionals, educators, and the general public remains low. Rare disease patient advocacy groups (RDPAGs), often led by caregivers, play a vital yet under recognized role in addressing these gaps through informal education and advocacy. This study explores how RDPAGs help fill systemic gaps in RD-related education. This qualitative descriptive study draws on 11 interviews with leaders of Polish RDPAGs engaged in advocacy, education, and public engagement. Interviews were analysed using Reflexive Thematic Analysis, following Braun and Clarke's six-phase framework, and reported in line with COREQ guidelines. The analysis identified four interrelated themes describing the e Authors: Domaradzki Journal: Frontiers in public health MeSH: Humans, Poland, Qualitative Research, Patient Advocacy, Rare Diseases, Interviews as Topic, Male, Female, Middle Aged, Adult