Privacy Policy

Privacy Policy

The information below describes how International XLH Alliance manages your personal information in accordance with the law and your rights. It does not cover every situation so please read notices on forms, web pages or other points where you give us information about yourself. These will describe the specific uses we make of the information, the reasons and legal basis for holding it as well as your rights.

Information we may hold about you and why

This could include:

  • in general, the information you give us when you fill in forms, subscribe to our services, (such as publications, sponsorship, or to attend events) and email newsletters.
  • to support you when you use any of our services, for example, our Infoline.
  • when you apply for a job or to volunteer with us, including to process applications and to monitor recruitment statistics. If you come to work for us, we will retain it to administer your employment including your pension.
  • to manage feedback and complaints.
  • information we hold about you to support our fundraising operations.

Data Processing

We may use your information in our legitimate interests to support our charitable work, or where we contact you by electronic means, with your consent, to:

  • process any donations you make.  This may be done on our behalf by one of our contractors, such as Blackbaud or Rapidata.
  • send you information about International XLH Alliance and its work and how you can support us. We may do this by post. We may also contact you by email, phone, text or social media, where you have given permission.
  • help manage our communications with you by sharing it with our contractors working on our behalf to process donations and send communications.
  • build a picture of our supporters and help identify other similar potential donors to target our advertising to. In doing this, we may share it with International XLH Alliance’s contractors, but you will not be identified (for example, any data we send to social media is in an unidentifiable form).
  • ascertain whether you might like to support us if you are a personal charitable trust or foundation or interested in philanthropic giving. We may use publicly available information about you to do this (for example websites or social media). We will always contact you first to see if you are happy to receive fundraising messages.
  • We use Google Analytics and similar technology to understand what aspects of our work people are interested in supporting. Information is collected anonymously, and it will not identify you.
  • We will use your data to fulfil our administrative requirements (for example, completing Gift Aid returns). We may also use your data for analytical purposes however you will not be identified for this purposes as the data is anonymous.

Information we collect on the website

This includes the IP address of your computer to:

  • help keep our site safe and secure.
  • help us diagnose faults with the website.
  • ensure that content from our site is presented most effectively for you and your computer. Please refer to our section on cookies.
  • to understand how users make use of our website, using Google Analytics and similar technology allowing us to improve it. Information collected using Google Analytics is collected anonymously, and it will not identify you.

Website cookies

Our website uses cookies to distinguish you from other users of our website. This helps us to provide you with a good experience when you browse our website and also allows us to improve our site. By continuing to browse this site, you agree to our use of cookies.

A cookie is a small file of letters and numbers that we store on your browser or the hard drive of your computer or mobile phone if you agree. Cookies contain information that is transferred to your computer’s hard drive.

We use the following cookies:

  • Strictly necessary cookies. These are cookies that are required for the operation of our website. They include, for example, cookies that enable you to log into secure areas of our website.
  • Analytical/performance cookies. They allow us to recognise and count the number of visitors and to see how visitors move around our website when they are using it. This helps us to improve the way our website works, for example, by ensuring that users are finding what they are looking for easily.
  • Functionality cookies. These are used to recognise you when you return to the website and record that you are a user of our website, or whether your web browser has Javascript enabled.
  • Targeting cookies. These cookies record your visit to our website, the pages you have visited and the links you have followed. We will use this information to make our website and the advertising displayed on it more relevant to your interests. We may also share this information with third parties for this purpose.

Please note that third parties (including, for example, advertising networks and providers of external services like web traffic analysis services) may also use cookies, over which we have no control. These cookies are likely to be analytical/performance cookies or targeting cookies.

Disabling cookies

You block cookies by activating the setting on your browser that allows you to refuse the settings of all or some cookies. However, if you use your browser settings to block all cookies (including essential cookies), you may not be able to access all or parts of our site.

Except for essential cookies, all cookies will expire after 5 years.

Web browsers may allow some control of most cookies through the browser settings. You can find out more about cookies, including how to see what cookies have been set and how to manage and delete them at or  For information on how to do this on a mobile phone, please refer to the handset instructions.

Who do we share your personal information with?

We may share your personal information:

  • with our contractors who carry out work on our behalf.
  • where we are under a legal obligation to disclose or share your information.
  • in some circumstances, we may disclose information or undertake to monitor of potentially criminal behaviour under the Regulation of Investigatory Powers Act.

Transferring information abroad

Your personal information may be transferred to, and stored and processed outside the European Economic Area (“EEA”). We will ensure that measures are in place to ensure that it is managed in compliance with Data Protection Law.

How long do we keep your information?

As long as necessary for the purpose/s, it was collected for. This will vary depending on the type of information, legal requirements or other justifications permitted by Data Protection Law.

Does the law allow this?

Data Protection law including the General Data Protection Regulation, Regulation (EU) 2016/679 sets out the principles we must adhere to and other conditions which must be satisfied. Forms, web pages or other places where you submit information will describe how the particular use complies with the law.

Your rights

You have the right to:

  • ask us not to process your personal information for fundraising or our marketing of International XLH Alliance. If you wish to do this, please contact us.
  • see copies of information held about you. Please send your request in writing to our Head Office. Please include copies of two forms of ID. We will respond as soon as possible and not longer than one month from receipt.
  • ask us to amend, update or delete your information in some circumstances or withdraw consent to our processing of your information for particular purposes by contacting our Head Office.

If you are unhappy with the way we are managing your personal information, please contact us. If you are still unhappy, you can complain to the Information Commissioner’s Office.

Who to contact

For queries about this privacy statement, or any data protection issues, please contact or by post at International XLH Alliance, 21 Providence Street, Greenhithe, Kent, DA9 9AA. United Kingdom.

Who we are

International XLH Alliance is the only organisation that brings together XLH patient organisations from around the world.

Patients come first in everything we do, and we are dedicated to ensuring we meet our charitable aims:

We are committed to:

Connecting groups worldwide we amplify the patient voice of X-linked hypophosphatemia (XLH) and related disorders, to set a global multi-disciplinary standard of care and research that could not be achieved independently, to ensure that all patients’ management is the same


Our registered office is at 21 Providence Street, Greenhithe, Kent, DA9 9AA. United Kingdom.

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