Background: Patients with rare diseases such as primary ciliary dyskinesia (PCD) face health disparities and are often challenged to find accurate information about their condition. We aimed to explore internationally how patients receive educational information about PCD.

Methods: A patient survey was developed by patient representatives and healthcare specialists from BEAT-PCD to capture experiences. Online versions of the survey were translated into 10 languages and completed in 27 countries with support from the European Lung Foundation. Of the respondents (n=330; female 77%), 52% of respondents had PCD and 48% were parents of children with PCD.

Results: A total 52% of respondents attended a PCD specialist centre for PCD diagnosis with the median age at diagnosis of 7 years. At diagnosis, 59% reported having PCD described to them but were not provided with written information, 22% received both verbal and written information, and 35% were told to access PCD information online. Information provided included a description of PCD and PCD diagnosis (78%), information about managing PCD (42%) and information about accessing services (12%). Only 4% received information to give to work or school to support understanding of PCD. Overall, 55% of respondents agreed they have to educate medical staff about PCD; 55% agreed it was easy to find PCD information in their language, and 37% found they got worried when they researched PCD online as they found information to be negative.

Conclusions: We will use these findings and future community partnerships to produce standardised translated patient education materials for PCD.