Registered in England and Wales Company Ltd. by Guarantee No. 0481412
A charity registered in England and Wales (no. 11001052)

Updated on 25th May 2020

Your privacy is important to the AKU Society. This privacy statement provides information about the personal information that the AKU Society collects and the ways in which the AKU Society uses that information.

The AKU Society 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 the changes.
The AKU Society adheres to the principles of the UK Data Protection Act (1998), and relevant EU law, including the
General Data Protection Regulation (GDPR) 2016/679
In this policy document:

‘we’ or ‘the AKU Society’ means the AKU Society;
‘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.
Cookies may be used on our website to enhance user experience. A cookie is a small data file stored on an individual’s hard drive that contains the user ID. You may choose to set your web browser to refuse cookies, or to alert you when cookies are being sent. The cookie does not track your movement on other websites.
2) Your contact with us
If you contact us by telephone, email, or by letter, we retain a record of your contact to help us respond to enquiries. We only collect this information if you provide it to us and we do not hold your information for longer than is necessary. Our email accounts are provided by Gmail, where all email messages and addresses are stored. You can view Gmail’s privacy policy here.
Particularly important personal information about patients and supporters is kept permanently on a database called eTapestry, provided by Blackbaud. You can view Blackbaud’s privacy policy here. We will ask for explicit consent from you before putting information on this database.
3) Mailing lists
We hold contact details for the monthly electronic newsletter. This mailing list is administered through MailChimp, who store the name and email address of everyone on the mailing list and track engagement with the campaign. You can view MailChimp’s privacy policy here.
Only those who explicitly consent via the sign-up form on the website will receive the newsletter. This information will never be used for purposes other than the transmission of the newsletter. You can unsubscribe at any point either by clicking a link in the newsletter or by emailing in**@ak********.org.
4) Social Media

We manage alkaptonuria-related forums on two specialist patient networking sites: RareConnect and PatientsLikeMe. You can view their privacy policies here and here. Posts and messages on these forums may be considered information and recorded by us. We will only retain this information for as long as necessary.
The AKU Society is also active on Facebook, Twitter and LinkedIn. As above, posts and messages may be considered useful information and kept for as long as necessary. These social networking sites also collect a certain amount of non-personal information regarding your engagement with us, which we use to improve our communications.
5) Staff and volunteers

We hold personal information about our staff, trustees and volunteers.
How long do we keep your information?
We only keep your information for 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. You may also 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 in**@ak********.org or in writing at the address below.

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 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 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 the AKU Society, 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 patients and supporters. These may contain images and personal information. We never publish any image or quotation unless explicit consent is given.
Can you access the information we hold about you?

Yes, you have the right to access information stored about you by us. You need to write to us at the address below or email us at in**@ak********.org. 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.
Links to other websites
The AKU Society’s website contains links to our microsite, which is covered by our privacy policy. It also contains links to other websites which we think might 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.
1) Email
2) Post

The AKU Society,
66 Devonshire Road,
United Kingdom CB1 2BL.
3) Telephone

+44 (0)1223 322897