Privacy Policy

Genetic Alliance UK

Registered in England and Wales Company Ltd by Guarantee No. 05772999

A charity registered in England and Wales (no. 1114195) and in Scotland (no. SC039299).

Your privacy is important to Genetic Alliance UK. This privacy statement provides information about the personal information that Genetic Alliance UK collects, and the ways in which Genetic Alliance UK uses that personal information. This privacy statement covers all the charity’s activities, including those described as part of the Rare Disease UK

and SWAN UK initiatives.

Genetic Alliance UK may change this policy at any time in line with legislative changes or changes to the policy of the organisation. Please check our website from time to time to ensure you are aware of any changes.

Genetic Alliance UK adheres to the Principles of the Data Protection Act (DPA) 1998 (UK) and relevant European Union Data Protection Directives.

In this policy document:

"we" or "Genetic Alliance UK" means the Genetic Alliance UK;

"you" means any person(s) about whom we collect non-personal and/or personal information.

What information do we collect?

We collect several different types of information.

1. Your browsing

We collect information about the users of our website. This information is non-personal. Whenever you access our website or download information, the web server automatically records the following non-personal information: the date and time you accessed our website, how long you were on the site, your internet domain name and the internet browser you use. This information helps us to improve our website service.

The YouTube videos embedded in our website make use of cookies. A cookie is a series of characters that is generated by our website and stored on your computer. The cookie does not collect or contain personal information about you, but allows you to keep logged in. The cookie does not track your movements on other websites. You only need to accept our cookie if you wish to view these videos on our website. YouTube may collect personal data through cookies used on their website. To view their privacy policy, click here.

Cookies are also used by the survey system on the Genetic Alliance UK website to ensure that only the Genetic Alliance UK administrator is logged into the survey manager area, and that it is not viewable to anyone else. Cookies are also collected within the survey system to ensure that visitors only complete the survey once. The cookie does not track your movements on other websites. You do not have to accept our cookie in order to be able to use our website.

2. Your contact with us

If you contact us by telephone, e-mail, facsimile or by letter, we retain a record of your contact to help us respond to enquiries, to monitor staff workloads and to evaluate and improve our service and in case of queries. We only collect this information if you provide it to us and we do not hold your information or images for longer than is necessary.

3. Your membership details

We collect information about our members. In order for our members to receive our magazine, we hold records of their names, addresses, telephone numbers and e-mail addresses. However, we only collect this information from you if you choose to provide it to us and we only share your name and contact details with others with your clear consent.

4. Your messages

We host a secure moderated Members' Forum for some of our activities. Any message you post on our forum is considered to be "information" and is recorded by us. This information is only retained for as long as is necessary.

5. Research information

If you volunteer to take part in one of our research projects, with your consent we will store your contact information and any recordings (for example, recordings of interviews or focus groups) along with written notes from the recordings.

6. Our staff and volunteers

We hold personal information about our staff, trustees and volunteers. We also hold information on recent job and volunteer applicants.

How long do we keep your information?

We keep your information for only as long as is necessary. You may ask us to destroy any personal information that we hold on you so that you receive no further information or contact from us. If you are a member, we will contact you at least once a year with a membership renewal form which contains all the information we hold on your and/or your organisation, so that you can amend, update and add to it or have your records deleted as you choose. If you have taken part in a research project, your research information will be kept for 3 years or as otherwise detailed to you in the project information sheet, after the end of the project then destroyed securely. You may ask to have a copy of the information we hold about you and/or your organisation and to amend, update, add to or delete it at any time. Should you wish to restrict the use of your personal information, please contact us by email at or in writing at the address supplied on the Genetic Alliance UK website.

Who has access to your information?

Our members of staff have access to your personal information. If you have taken part in a research project, your research information can only be accessed by the researcher who collected the information.

We may use third parties (companies or volunteers) to provide communication services on our behalf. We will only provide those third parties with the information they need to deliver the service and they are prohibited from using that information for any other purpose. We require all such third parties to treat your personal information as fully confidential and to fully comply with all applicable UK Data Protection and consumer legislation. If you have taken part in a research project, we will not tell anyone you have taken part and we will not share your information with any third party without your consent. In some cases, a professional transcribing company is used to type up exactly what was said in recorded interviews. The transcribing company signs a confidentiality agreement with us for each research project.

We may disclose personal information if we receive a complaint about any content you have posted or transmitted to or from one of our sites, if required to do so by law or if we believe that such action is necessary to protect and defend the rights, property or personal safety of Genetic Alliance UK, our members, any child or vulnerable adult, our staff, any visitor or third party. Except as indicated above we will not use or transfer this data to any third parties without your prior permission.


We publish information leaflets, reports and a newsletter for our members, health professionals and those that view the Genetic Alliance UK website and these may contain from time to time images and personal information of our member families. We never publish any image of or anything without clear consent from those concerned. We might use quotes from your research information in academic publications and conferences but we will always ask your permission first.

Can you access the information we hold about you?

Yes, you have the right to access information stored about you by Genetic Alliance UK. You need to write to us at the address below or email us at and pay the prescribed fee (GBP10) to us to cover our costs (we waive the fee for our members). We will then provide you with the following information:

What personal data is stored

The purposes for which your data is being processed

Who has access to your data

What security measures do we have?

We have implemented technology and policies to protect your privacy from unauthorised access and improper use and will update these measures as new technology becomes available. While we cannot ensure or guarantee that loss, misuse or alteration of data will not occur, we shall endeavour to prevent this.

Where is the information stored?

Information which you submit via our website is sent to a computer located in the United Kingdom. This is necessary in order to process the information and to send you the information you have requested. Information submitted by you may be transferred by us to our other offices as referred to in the section "Who has access to your information?" in this document.

All other information is stored either at our offices located in the United Kingdom or at a secure storage site located in the United Kingdom.

Research information is stored on an encrypted computer hard drive and in a locked, dedicated cabinet.

Links to other websites

Genetic Alliance UK's website ( may contain links to selected websites which we feel may be of interest.

Please note that once you use one of these links to leave our website, we do not have any control over that other website. Please exercise caution and refer to their privacy policy and/or terms & conditions of use as we cannot be held responsible for the protection or privacy of any information you provide to a third party.

Any questions about privacy?

If you have any questions or concerns about how we protect your personal information, please contact us.



Genetic Alliance UK
Unit 4D, Leroy House
436 Essex Road
N1 3QP
United Kingdom


+44 (0)20 7704 3141

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