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“Right now, all we can do is manage PWS as best we can, tirelessly building our knowledge and raising funds for research. There is a cure, and with your help, we can find it!”

Privacy Policy

The Foundation for Prader Willi Research UK (FPWR UK) is committed to protecting and safeguarding your personal information. As part of this commitment, we hold a Privacy Policy to meet the high standards of General Data Protection Regulation (GDPR).

​Our Privacy Policy explains your rights under these new regulations. By continuing to use our sites (our websites and social media pages) after this date, you agree to these terms.

​What information do we collect? The personal information we collect from you may include: your name, address, telephone number, email, contact preferences, date of birth, age, gender, nationality, employment and your interest in PWS. We may collect information when you subscribe to our emails, send us emails, write to use, contact us at events, use our social media sites and when you donate.

​How do we use your information?

We use your information to pursue the legitimate interests of our organisation, to communicate about our work.  All information will be used anonymously.

We may use your information in a number of ways including to provide you with information which you may be interested in concerning research, events and activities. We may also use your information to ask you to take part in surveys, fundraising activities or conferences.

​You will not receive offers from other organisations or companies as a result of giving your details to us. We will not sell or pass on your information to any third parties.

How do we store your information?

​We will take appropriate measures to ensure your data is kept safe, accurate and up to date. We cannot be held responsible for the privacy of data collected by websites not owned or managed by FPWR UK, including those linked to through our website.

How can you update your information or unsubscribe?

​To update your details please email us at To be removed from our mailing lists please email us at

Cookie consent

​When you visit our websites and our social media pages (such as Facebook, Twitter, Instagram), we use Cookies to collect information about your visit, including which pages you visit and how long you visit for. By using our sites you agree that, unless you have set your computer’s browser to reject them, we will use that data to evaluate how our website is used. We do not link that information to the personal information we hold about you.