The Big PWS Survey
Please help us show how Prader-Willi syndrome affects people's lives in the UK
One of the challenges we face is that because PWS is rare, it is hard to get in depth information about how PWS affects people in the UK.
For example, it would be useful to know how different elements of the syndrome, (like scoliosis, skin picking, or mental health issues) affect people at different stages of their lives, whether families are getting the support they need, such as respite, EHCPs and access to mental health services, and how this varies in different parts of the UK.
It is only by collecting this information that we can see where the gaps are, and where better services and support are needed.
We have created a survey to try and get a picture of how Prader-Willi syndrome is affecting people's lives in the in the UK right now, and we need as many people to fill it in as possible.
We will use the results to inform our new strategy, and help us develop the support we provide. We will also use it to show the government and other organisations what people with PWS need, and where services need to be improved.
There are three different versions of the survey - please fill in the one that reflects your connection to PWS:
For people with PWS: https://bit.ly/HowPWSAffectsMe (10-20 minutes)
For parents and families of people with PWS: https://bit.ly/PWSSurvey2026 (30-40 minutes)
For professionals who care for or support people with PWS in any capacity: https://bit.ly/PWSProfessionalsSurvey (5-10 minutes)
Each survey can be completed anonymously, or you can add your name and contact details if you're happy for us to get in touch to ask you further questions.
The closing date for responses is October 30th, 2026.
By completing this survey you are helping us improve life for everyone affected by PWS, thank you. We really appreciate your commitment in putting aside the time to tell us about your experience.
