Life of Pompe

Life of Pompe

Posted On: 19/11/2020 Recently Posted!

Could you spare us just a few minutes of your time?

We have created a short in-house survey - 'Life of Pompe' - of which each response will help us to ensure all future reports and articles feature the issues and information which matter to all of our members.

The survey aims to explore experiences of people with Pompe in their lives to see if there are interesting themes in common. By this research, we hope to inspire future articles, videos, surveys, and research.

The survey has 11 short questions and may only take a couple of minutes of your time, but do feel free to write as much as you like, and don't worry about ignoring any of the questions. Feel free to re-submit the survey if you think of something later.

Life of Pompe - Survey


Your response will be held securely and will not be shared outside of the Pompe Support Network. Any report or article written will use only anonymised data from the responses received.


Thank you!

If you're having any computer issues accessing the survey then we may be able to assist you via our IT Support expert.