Our first ever surveys for and about people with PWS are still open. Categorised in various age groups, they were put together in conjunction with our OWL (Our Way of Life) focus group and aim to give us a true snapshot of what life is like for individuals living with PWS in the United Kingdom.

If you're a parent or carer of someone with PWS or you have PWS and are over 18 please complete the survey at the respective link below.


0-5 Years


6-17 Years


18+ Years (for parent or carer)


18+ Years (to be completed by individuals with PWS)