Privacy Statement

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Privacy Statement

Your privacy is important to EGAN. This privacy statement provides information about the personal information that EGANcollects, and the ways in which EGANuses that personal information. EGAN 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. EGAN adheres to relevant European Union Data Protection Directives.

In this policy document:
"we" or "EGAN" means the European Genetic Alliances’ Network;
"you" means any person(s) about whom we collect non-personal and/or personal information.

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.
2. Your contact with us
If you contact us by telephone, e-mail, facsimile or by letter, we may 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. Our newsletter and leaflets
We publish information leaflets and a newsletter for our members, health professionals and those that view the EGAN 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.
5. Our staff and volunteers
We hold personal information about our staff, trustees and volunteers. We also hold information on recent job 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. 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.

Who has access to your information?

Our members of staff have access to your personal 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. 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 EGAN, 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.

Can you access the information we hold about you?

Yes, you have the right to access information stored about you by EGAN. You need to write to and 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 Netherlands. 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.

Links to other websites

EGANs 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.

Website: Websteen