Privacy Policy
The purpose of this Privacy Policy is to describe the types of information that we collect from you when you contact us, sign up to our mailing lists or use our services, or become a member of the UK Forum and to explain how we use that information.
Who we are
We are the UK Forum and our website address is www.haemoglobin.org.uk and we will only use your data in a manner that is appropriate considering the basis on which that data was collected.
- Administer your membership, product or the service you have signed up for.
- Support medical research.Provide information to you.Inform you of news and events in the field of haemoglobinopathies.
- Offer you the opportunity to take part in research or to inform you of related research taking place.
- Ask for your opinion or feedback.Promote fundraising activities.
- Promote campaigns we are running.Invite you to local events.
- Send you newsletters and other news.
- Offer you the opportunity to take part in research or policy work.Advertise a media opportunity we have.
What information do we collect about you?
We may collect personal information that you share with us about you when you contact or interact with us. The personal information we collect may include:
- Information that is relevant to the product or service you are signing up for when registering with us.
- Questions, queries or feedback you send us via email, post or the website.
- Phone calls to us.Any personal information that you disclose in the course of participating in our research or surveys.
- Personal data you share with us when you place orders for merchandise or make a donation via email, over the phone on our website.
- Information you have posted via social media – this includes counting your name for our engagement statistics.Information given in person during an event or meeting with a member of staff or volunteer.
- This only applies to personal information given at the registration of an event, or in the event of a safeguarding disclosure which requires our action in line with UK law.
- Your IP address, details of how you use the website, browser user agent string and which version of web browser you used when you visit our website.Information on how you use our website, using cookies and page tagging techniques to help us improve the website.
- We cannot personally identify you using this data.
Comments
When leaving a comment on our website an anonymised 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 can be found at 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 these images.
Media
Although our social media channels are monitored by staff, we have no control over information you or others may submit, post or share on social media or other websites – even where we link to them from our own website or they link to our website. When you use these sites you do so in accordance with the separate terms and conditions and policies of these sites.
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.
Cookies
A cookie is a line of text and numbers that is created by our website and stored on your computer when you visit our site. When you return to our site, the cookie associates your computer with the information that you gave us when you first visited or registered. It helps us evaluate how often visitors return to the site. Of course, you can still make full use of the site if you specifically choose to delete or not to accept the cookie on your browser.
If you leave a comment on our site you may opt-in to saving your name, email address and website in cookies. These cookies will last for one year.
If you have an account and log in to the site, 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.
If you edit or publish an article, an additional cookie will be saved in your browser. This cookie includes no personal data and indicates the post ID of the article you just edited. It expires after 1 day.
Articles on our website may include embedded content (videos, images, articles etc). Embedded content from other websites behave in the 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.
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.
The UK Forum for Haemoglobin Disorders cannot bear responsibility for the content of the information resources on this website or the content of any external Internet sites or public message boards.
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 fulfills 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
If you have an account on this site, or have left comments, you can request to receive an exported file of the personal data we hold about you, including any data you have provided to us. You can also request that we erase any personal data we hold about you. This does not include any data we are obliged to keep for administrative, legal, or security purposes.
Emma trained at St Barts and the Royal London School of Medicine, University of London and qualified in 2001 and is currently working as a Haematology Consultant between UCLH and the Whittington Hospital. She was Clinical Lecturer in Sickle Cell Disease at King’s College Hospital from 2009 to 2013 and during that time was awarded her PhD based on research into markers of severity and predictors of organ dysfunction in sickle cell disease. In 2013 she was awarded the Early Stage Investigator prize from the British Society of Haematology. She is the Haemoglobinopathy Coordinating Centre lead for North Central and West London, East Anglia and the South West and Central England.
John James OBE has 33 years of experience within the NHS including 4 CEO roles. He was Chair of the West London Cancer network (2002-2005) and Chair of the North West London Diabetes Network (2003-2004). 
Dr Subarna Chakravorty is a Paediatric Haematologist with a special interest in non-malignant haematology and stem cell transplant for haemoglobinopathy and non-malignant diseases. She joined King’s College Hospital as consultant in July 2015. Prior to that, Subarna led the Paediatric Haemoglobinopathy service at Imperial College Healthcare NHS Trust and the Imperial Paediatric Red Cell Disorders Network for 5 years, where she was also involved in the bone marrow transplant programme for paediatric haemoglobinopathy. Since 2021, Subarna has been involved in the adult sickle cell bone marrow transplant service at King’s College Hospital.
Dr Rachel Kesse-Adu is a consultant haematologist who qualified in medicine from Imperial College School of Medicine in 2002 and completed her specialist training in haematology at Kings College Hospital in London in 2012.