Have you completed our shared experiences survey? Our anonymous survey explores shared experiences - things like occupation, environment and diet.

Your experience of Paget’s disease

Research shows that genetics play a role in Paget’s disease and there is ongoing discussion about possible environmental influences, but many questions remain unanswered.

We speak with people on our Helpline, who often share thoughts and have queries about how they may have developed Paget’s disease. We are also aware that some have asked why we haven’t recently gathered feedback from those living with the condition about their experiences. So, we are inviting you to take part in a survey. Please note that this survey is only for people who have been diagnosed with Paget’s Disease of Bone.

What are we hoping to learn?

The aim of the survey is simply to explore shared experiences among those living with the condition and is intended purely for interest. If we receive enough responses, it may help us determine whether there are common themes or patterns in areas such as occupation, diet or environment.

The survey is anonymous; however, you can choose to provide contact details at the end. There are a couple of open questions where, if you like, you can share your own thoughts and experiences in your own words, as your individual perspective is important to us.

What will happen to the results?

In due course, we intend to publish a summary, with responses anonymised, in our Paget’s News magazine. 

You may have received the survey by email, read about it in our magazine or perhaps you've seen it on Facebook. Please only complete it once.

Thank you!