Paget’s Association website privacy policy
(May 2025)
This Policy applies as between you, the User of this Website and the Paget’s Association, the owner and provider of this Website. This Policy applies to our use of any, and all Data collected by us in relation to your use of the Website.
1. Definitions and Interpretation
In this Policy the following terms shall have the following meanings:
“Data” - means collectively all information that you submit to the Paget’s Association via the Website. This definition shall, where applicable, incorporate the definitions provided in the General Data Protection Regulation effective from 25th May 2018;
“Cookie” - means a small text file placed on your computer by this Website when you visit certain parts of the Website and/or when you use certain features of the Website. Details of the cookies used by this Website are set out in Clause 10;
“Pixels” or “web beacons” - means a segment of code placed on a website or in an email used to monitor the behaviour of users visiting the website or viewing the email.
“The Paget’s Association” - means the National Association for the Relief of Paget’s Disease which is also known as The Paget’s Association, Jactin House, 24 Hood Street, Ancoats, M4 6WX. Registered charity number 266071;
“UK and EU Cookie Law” - the Privacy and Electronic Communications (EC Directive) Regulations 2003 as amended by the Privacy and Electronic Communications (EC Directive) (Amendment) Regulations 2011;
“User” - means any third party that accesses the Website and is not employed by the Paget’s Association and acting in the course of their employment;
“Website” - means the website that you are currently using (www.paget.org.uk) and any sub-domains of this site unless expressly excluded by their own terms and conditions.
2. Scope of this Policy
This Policy applies only to the actions of the Paget’s Association and users with respect to this Website. It does not extend to any websites that can be accessed from this Website including, but not limited to, any links we may provide to social media websites.
3. Data Collected
Without limitation, any of the following data may be collected by this Website from time to time:
3.1 Name.
3.2 Date of birth.
3.3 Gender.
3.4 Contact information such as email addresses and telephone numbers
3.5 Demographic information such as postcode, preferences and interests..
3.6 Domain name, location and IP address (automatically collected).
Web browser type,version and device (automatically collected), when Website was visited or email read.
3.7 Operating system (automatically collected.
3.8 A list of URLs starting with a referring site, your activity on this Website, and the site you exit to (automatically collected).
4. Our Use of Data
4.1 Any or all of the above data may be required by us from time to time in order to provide you with the best possible service and experience when using our Website. Specifically, data may be used by us for the following reasons.
- To provide you with Membership of the Paget’s Association including sending member benefits as agreed.
- To send you information that may be of interest to you such as updates regarding Paget’s research or invitations to events. This is an opt in / out function and your preferences can be updated at any time.
- If you have registered for an event, we may share your details with the event organiser such as dietary and accessibility requirements.
- Improvement of our products / services.
4.2 All personal data is stored securely in accordance with the principles of the General Data Protection Regulation.
5. Automated profiling using your personal data
5.1 We do not perform automated profiling of personal data.
6. How do we protect the privacy of children?
6.1 Our website is not intended to be used by those under 18. Should any data belonging to anyone less than 18 years of age be found, it will be deleted immediately.
7. Third Party Websites and Services
7.1 Unless we are obliged or permitted by law to do so, your data will not be disclosed to unauthorised third parties.
7.2 The Paget’s Association does not sell, trade, or rent your personal information to others.
7.3 We use an online email marketing application that links to our database enabling us to create and manage some of the emails that we send to you.
7.4 We may use mailing and distribution houses, postal service providers and payment processing companies, for the fulfilment of services on our behalf.
7.5 This Website does not take direct payments or donations. Our payments are processed by Stripe or PayPal. In addition, where stated, there are links to the website Just Giving.
7.6 The Paget’s Association may, from time to time, employ the services of other parties for dealing with matters that may include, but are not limited to, payment processing, delivery of purchased items, search engine facilities, technical support, and marketing, including social media. The providers of such services may have access to certain personal data provided by Users of this Website
7.7 We sometimes work with third parties to advertise, provide, or complement our services, and these partners may set and access their own cookies, pixels or beacons and similar technologies on your device. Likewise, if you receive emails from us, we may use these technologies to capture data such as when you open our message or click on any links or banners our email contains. This data allows us to gauge the effectiveness of our communications and marketing campaigns.
The information collected and stored through these technologies includes IP address, unique identifiers, time stamps, browser type and other browser information, referring website, and more generally, what web pages you visit, the ads you view and how you interact with these. We and our partners, including Google Analytics, may also use these technologies for analysing usage trends, assisting with fraud prevention, and providing certain features to you.
We take care to use reputable providers of the services named above. Any data used by such parties is used only to the extent required by them to perform the services that the Paget’s Association requests. Any use for other purposes is strictly prohibited. Furthermore, any data that is processed by third parties shall be processed within the terms of this Policy and in accordance with the General Data Protection Regulation.
8. Links to Other Websites
8.1 This Website may, from time to time, provide links to other websites. The Paget’s Association has no control over such websites and is in no way responsible for the content thereof. This policy does not extend to your use of such websites. Users are advised to read the privacy policy or statement of other websites prior to using them such as YouTube and Twitter.
9. Your Rights
9.1 The General Data Protection Regulation, effective from 25th May 2018, ensures that all individuals have the right to:
o be informed about the collection and use of your personal data
o have incorrect data corrected
o restrict processing of your data and to have your data erased, unless your data is being processed in line with a legal requirement
o object to the use of your data
o ask for a copy of any of your personal data held by the Paget’s Association, a subject access request (SAR) can be submitted by email to membership@paget.org.uk
Further information can be found on the website of the Information Commissioner’s Office (ICO): https://ico.org.uk/
9.2 You can contact us using the contact details on our Website if you would like to discuss any aspect of the information we have about you or if you object to the way in which your personal data is being processed, wish to raise a complaint about how we use your data, or wish to withdraw your consent for the processing of your data.
10. Security
10.1 Data security is of great importance to the Paget’s Association and we have put in place suitable physical, electronic, and managerial procedures to safeguard and secure data collected via this Website.
10.2 Our Website uses Secure Sockets Layer security technology for establishing an encrypted link between a web server and a browser.
11. Cookies
Cookies are tiny text files stored on your computer when you visit certain web pages.
11.1 The Paget's Association uses cookies by utilising Google Analytics to monitor the usage of the Website solely as an aid to improving the content and experience of visitors to the Website.
11.2 You can adjust your cookie settings in your web browser.
11.3 Google Analytics (and most web tracking software) uses cookies in order to provide meaningful reports about visitors to the Paget's Association Website. Google Analytics cookies do not collect personal data about Website visitors.
11.4 The analytics services used by this Website use cookies to gather the required information. [Some of these Cookies may be placed immediately when you decide to visit the Website and it may not be possible to obtain your prior consent. You may remove these Cookies and prevent future use of them.]
11.5 You can choose to enable or disable cookies in your internet browser. Most internet browsers also enable you to choose whether you wish to disable all cookies, or only third party cookies.
11.6 You can choose to delete cookies at any time however, you may lose any information that enables you to access the Website more quickly and efficiently including, but not limited to, personalisation settings.
11.7 It is recommended that you ensure that your internet browser is up-to-date and that you consult the help and guidance provided by the developer of your internet browser if you are unsure about adjusting your privacy settings.
12. Changes to this Policy
12.1 The Paget’s Association reserves the right to change this Policy as we may deem necessary from time to time or as may be required by law. Any changes will be immediately posted on the Website, and you are deemed to have accepted the terms of the Policy on your first use of the website following the alterations.
References
o Website: www.paget.org.uk
o The Paget’s Association’s Policy no 4: Data Protection Policy.
A copy of our Data Protection Policy is available on request. It details how we ensure that your data is not held for longer than necessary and is retained and destroyed securely, in line with legal requirements, good practice, and to ensure we provide you with a high-quality service.