We would like to sincerely thank the 921 members of the PDA community who took the time to complete our survey and tell us about their experiences. It is this lived experience that has informed this report and our recommendations for change.

We would also like to thank the PDA Society team – including staff members and volunteers – who helped to design and pilot the survey, and to analyse the data collected.

Please cite this report as: PDA Society, (2024). PDA in our words: Why we need to listen to PDA people and their families. Published online: PDA Society