Lipoedema UK Privacy Policy & Membership Privacy Policy

Who we are

We are Lipoedema UK, the UK registered charity for people living with lipoedema and those interested in lipedema. 

Our commitment to maintaining your privacy

This Privacy Policy describes how Lipoedema UK collects, uses and discloses Personal Information, and what choices you have with respect to your Personal Information. 

We take the privacy and security of your Personal Information very seriously and are committed to ensuring that we collect, use, disclose and store your Personal Information in accordance with applicable data protection and privacy laws. 

This policy is drafted in accordance with data protection legislation applicable in England and Wales, including but not limited to, the Data Protection Act 2018 (DPA) and the General Data Protection Regulations (GDPR). 

The protection of privacy and the safeguarding of your Personal Information is important to us. We respect your privacy rights and are committed to protecting your privacy online. Please read this Privacy Policy carefully before using the Services on our website. 


In this Privacy Policy: 

Any reference to “Charity”, “we”, “us” and “our” refers to Lipoedema UK. 

Cookies” are generally small data files that are downloaded on to your computer when you visit a website. In this Privacy Policy, Cookies refer to any type of tracking technology used on our Website to collect Cookie Information about Users. 

Cookie Information” is information automatically collected about website visitors by the Cookies, as described further below. Cookie Information does not identify you personally but could be combined with your device’s IP address to target communications to you based on what’s in such Cookie Information.

GDPR” means the EU General Data Protection Regulation, as incorporated into the laws of England and Wales. 

Personal Information” is information that identifies, or can be used to identify, an individual, directly or indirectly, such as first and last name, date of birth, email address, physical address, telephone number, or other demographic information and sensitive data such as gender. 

User” or “you” is a reference to a visitor or member who accesses or uses the Services, or any other person whose information is held by Lipoedema UK. 

Website” or “Site” means, and/or any other website(s) operated by or on behalf of Lipoedema UK. 

1. Information We Collect

1.1 Information You Provide: When you become a Member or use certain features of the Site, we may collect personal information including but not limited to: your name, job title (for Clinician & Healthcare Professional Members), date of birth, demographic information including postcode, contact details including email address, preferences, interests and payment information. 

1.2 Information We Automatically Collect: We may also collect certain information automatically when you use the Site, such as your IP address, browser type, operating system, and browsing behaviour. 

1.3 We do not knowingly collect or solicit Personal Information from anyone under the age of 18. 

2. Use Of Information

2.1. We use the information we collect to provide and improve our services to you, communicate with you, keep you up to date with our work, process payments, and personalise your experience on the Site. 

2.2. We may also use your information to send you promotional materials or other communications, to keep you informed about how your support is helping to achieve our aims. We may also use your information to communicate with you about our research, latest news, appeals and fundraising activities. At any time you can opt out of receiving these communications by contacting us at: or following the unsubscribe link in our emails. 

3. Disclosure Of Information

3.1. We may share your information with third-party service providers who help us operate the Site or provide services to you. These may include, but are not limited to, information technology consultants to provide hosting, support and development services in relation to our systems and databases, assistance with handling customer support enquiries, processing transactions or for shipping. Those companies will be permitted to obtain only the Personal Information they need to deliver the services. These service providers are required to keep your information confidential and are not permitted to use it for any other purpose. 

3.2. We may also disclose your information if required by law or in response to a valid legal request. 

4. Data Security

4.1. We take reasonable measures to protect your Personal Information from unauthorised access, use, or disclosure. In order to prevent unauthorised access or disclosure, we have put in place suitable physical, electronic and organisational procedures to safeguard and secure the Personal Information we collect. However, no method of transmission over the Internet, nor electronic storage, is 100% secure, so we cannot guarantee its absolute security. 

4.2 All payments are fully automated with an immediate response. Your complete credit card number cannot be viewed by us or any outside party. All transactions are performed under 128 Bit SSL Certificate. We never permanently store complete credit card details. We follow generally accepted industry standards to protect the Personal Information submitted to us, both during transmission and once we receive it, and the Site is regularly tested to ensure security provisions remain adequate. Bank account information is never accessible, either by our 

employees/volunteers/contractors or by third parties. 

4.3 We encourage you to use a different password for our site to any other sites where you have accounts, and to change your password from time to time. 

5. Your Choices

5.1. You can choose not to provide certain information, but this may limit your ability to use certain features of the Site or to become a Member. 

6. How We Use Cookies

6.1 The Cookies are small files which ask permission to be placed on your computer’s hard drive. Once you agree, the files are added and the Cookies help analyse web traffic or let you know when you visit a particular site. Cookies allow web applications to respond to you as an individual. The web application can tailor its operations to your needs, likes and dislikes by gathering and remembering information about your preferences. 

6.2 We use traffic log Cookies to identify which pages are being used. This helps us analyse data about webpage traffic and improve our Website in order to tailor it to the Users’ needs. We only use this information for statistical analysis purposes and then the data is removed from the system. 

6.3 Overall, Cookies help us provide you with a better website by enabling us to monitor which pages you find useful and which you do not. The Cookies in no way give us access to your computer or any information about you, other than the data you choose to share with us. 

6.4 You can choose to accept or decline the Cookies. Most web browsers automatically accept the Cookies, but you can usually modify your browser setting to decline the Cookies if you prefer. This may prevent you from taking full advantage of the website. 

7. Right To Access

7.1 You have a right under data protection legislation to access your Personal Information, subject to exceptions allowed by law. If you would like to exercise this right, or have any concerns about the Personal Information that is being held about you, please let us know. For example, any personal information that you inform us is incorrect will be amended or deleted, as appropriate. 

7.2 You may be required to put your request in writing for security reasons and/or asked to confirm your identity, to help us ensure we are responding to the data subject or an appropriately authorised person.

8. Rectification, Erasure, And Restriction

8.1 You have the right to ask us to limit or cease processing or to erase Personal Information we hold about you in certain circumstances. In responding to such requests, we will communicate to the User concerned the impact of such restrictions or deletions. 

8.2 We take reasonable steps to ensure that the Personal Information we hold about you is accurate and up-to-date and we will comply with any requests to rectify any inaccurate Personal Information we may hold about you. We do ask that you notify us immediately if you change any part of your Personal Information, so we can update our records. 

9. Right To Object

9.1 You have the right to object to our Website using your Personal Information on the basis of its legitimate interests and the right to ask us not to process your Personal Information for marketing purposes, where relevant (see “Use of Your Personal Information” section above). 

9.2 We are committed to respecting individuals’ rights. You may action your rights by contacting us using the details provided below and we will comply with your requests unless we have a lawful reason not to do so. We will endeavour to handle any requests within a reasonable timeframe. 

10. Controlling Your Personal Information

10.1 You may choose to restrict the collection or use of your Personal Information in the following ways: 

  • whenever you are asked to fill in a form on our Website, look for the boxes and tick only those categories which you are interested in and wish to receive information about; 
  • if you have previously agreed to us using your Personal Information for direct marketing purposes, you may change your mind at any time by writing to or emailing us using the details provided below. Please note that it may take time to update our internal records and remove you from any such mailing lists.

11. Links To Other Websites

11.1 Our Website may contain links to other websites of interest. However, once you have used these links to leave our Website, you should note that we do not have any control over other websites. Therefore, we cannot be responsible for the protection and privacy of any information which you provide whilst visiting such sites and such sites are not governed by our Privacy Policy. You should exercise caution and look at the privacy statement applicable to the website in question. 

12. How Long Do We Retain Personal Information For?

12.1 We will only retain Personal Information for as long as is necessary to provide our services to you or for as long as we reasonably require to carry out our lawful business purposes and/or comply with statutory or other legal requirements. 

13. Data Breaches

13.1 We will comply with the requirements of the Information Commissioner (ICO) in the event of a data breach, including, but not limited to, consideration of reporting a data breach to affected users and/or the ICO, and take measures to remedy the breach as promptly as possible. 

14. Complaints

14.1 If you are unhappy with the way in which we process your Personal Information, please contact us using the details provided at the end of this document. 

15. Changes To This Privacy Policy

15.1 We reserve the right to make amendments to this Privacy Policy at any time. Changes and clarifications will take effect immediately upon their posting on our Website. If you have objections to this Privacy Policy or any updated version thereof, you should not access or use our Website. 

16. Contacting Us

6.1 If you have any concerns about your privacy when using our Site, or the information we collect from you as part of using our site, please contact us via email at

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