Who we are:

UK Thalassaemia Society
19 The Broadway
Southgate Circus
London N14 6PH

Phone: 020 8882 0011
Email: office@ukts.org

What personal data we collect and why we collect it


When visitors leave comments on the site we collect the data shown in the comments form, and also the visitor’s IP address and browser user agent string to help spam detection.

An anonymized string created from your email address (also called a hash) may be provided to the Gravatar service to see if you are using it. The Gravatar service privacy policy is available here: https://automattic.com/privacy/. After approval of your comment, your profile picture is visible to the public in the context of your comment.


If you upload images to the website, you should avoid uploading images with embedded location data (EXIF GPS) included. Visitors to the website can download and extract any location data from images on the website.

Contact forms & Cookies

If you leave a comment on our site you may opt-in to saving your name, email address and website in cookies. These are for your convenience so that you do not have to fill in your details again when you leave another comment. These cookies will last for one year.

If you visit our login page, we will set a temporary cookie to determine if your browser accepts cookies. This cookie contains no personal data and is discarded when you close your browser.

When you log in, we will also set up several cookies to save your login information and your screen display choices. Login cookies last for two days, and screen options cookies last for a year. If you select “Remember Me”, your login will persist for two weeks. If you log out of your account, the login cookies will be removed.

If you edit or publish an article, an additional cookie will be saved in your browser. This cookie includes no personal data and simply indicates the post ID of the article you just edited. It expires after 1 day.

Embedded content from other websites

Articles on this site may include embedded content (e.g. videos, images, articles, etc.). Embedded content from other websites behaves in the exact same way as if the visitor has visited the other website.

These websites may collect data about you, use cookies, embed additional third-party tracking, and monitor your interaction with that embedded content, including tracking your interaction with the embedded content if you have an account and are logged in to that website.

Who we share your data with

We will only pass your data to third parties if:

You have provided your explicit consent for us to pass data to a named third party.
We are using a third party to process data on our behalf and have a data processing agreement in place with that third party which meets the standards of our privacy policy and fulfils our legal obligations.

We may also have to pass on your personal information if we have a legal obligation to do so.

Visitor comments on our website may be checked through an automated spam detection service.

How long we retain your data

While we are providing products or services to you or you are a member of our society, we will store your data in order to provide that service for as long as you want it. If you ask to ‘be forgotten’ and would like all information removed on you, we will do this and provide written confirmation that we have removed all of the information we hold on you (this applies to our own website but we will be unable to remove your information or posts from any social media sites). The only exception to this is where such a request would contravene an existing reason/law that is of higher importance than your own to be forgotten.  

If you leave a comment on our website, that comment, and its metadata are stored indefinitely. This is so we can recognise and approve any follow-up comments automatically instead of holding them in a moderation queue.

For users who register on our website, we will store the personal information they provide in their user profile. Users will be able to see, edit or delete this information at any time by accessing their profile. Website administrators are also able to view and edit this information.

What rights you have over your data

You can contact us to request a copy of any information we hold about you, ask us to correct or remove any inaccurate information or ask us to delete some or all of the information we have collected about you and your family at any time.

You have the right to be forgotten – which means we will remove all information held on you.  The only exception to that is if we have a legal obligation to keep your data in order to fulfil a contract with you.  This cannot apply to data which is outside of our control, for example social media posts.

It is our commitment that we will only collect relevant information on you. If you have been asked to fill in your details and want to know why we have asked for a specific piece of information, contact us and we will explain why.

For details of how you can request all the information we hold on you or how to have information amended or removed, email: office@ukts.org

Where we send your data

Visitor comments may be checked through an automated spam detection service.

What data breach procedures we have in place

In accordance with the new GDPR legislation, all data breaches of personal data will be reported to the Information Commissioner’s Office within 7 days.