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).
We at FPWR UK strive to keep the community that we support up to date in all aspects charity related; such as research updates, charity events, fundraisers, and specialist clubs. We do this via social media, our website blogs, WhatsApp community groups and emails. For this to be possible, we will request data and that will be stored securely on our database.
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 will only store data that has been specifically provided to us by you or by a person with parental responsibility or guardianship when it relates to a person under the age of 18 and for only the purpose that it has been provided for. (meaning that should a person ask to be added to PeeWees birthday club, this will not automatically add them to our mailing list for our newsletter, PeeWees Post, this is a seperate list so therefore you will need to agree to be added to both).
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 at FPWR UK will ensure to take all appropriate measures to ensure your data is kept safe, accurate and up to date on our database. 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?
You have control on the data that we store, and for how long we store it for, should you wish to up date your details there is a form on our website which can be found here which will allow you to update the data we have, this will then be added to our database and any previous data will be deleted. Or you can email us at info@fpwr.org.uk or shannon@fpwr.org.uk with the change of details and we will ensure the database is updated.
Should you wish to unsubscribe to our mailing list or be removed from the PeeWees Birthday Club, you can contact us via email at info@fpwr.org.uk or at shannon@fpwr.org.uk and we will remove your data as soon as possible. You are also able to follow the unsubscribe link at the bottom of all emails that are sent to you. We can also be contacted via our social media platforms with your request.
Please take note that our staff are part time so there may be a slight delay in when data is updated or removed but please be sure it will be done within the 30 days from contact as per the GDPR UK legislations.
Should at any point that FPWR UK discontinue PeeWees Post or PeeWees Birthday Club, we will contact you and all data will be deleted in a safe and secure manner.
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.