• Privacy Policy

    AMEND is a patient group run for the benefit of everyone affected by the multiple endocrine neoplasia disorders and their associated familial and sporadic tumours. In addition to providing email and telephone support, AMEND runs a HON-Code Certified website and produces patient information with the support of an expert medical advisory team. AMEND became a charity registered in England and Wales in 2003 (1099796) and a Charitable Incorporated Organisation in 2014 (1153890).

    AMEND is committed to ensuring that anyone using its services maintain the level of privacy to which they are entitled. This is particularly important when dealing with genetic conditions. Under General Data Protection Regulations 2018 and the UK Data Protection Act 1998, AMEND has a legal duty to protect any information it collects from you. We use leading technologies and encryption software to safeguard our data, and strict security standards to prevent any unauthorised access to it.

    Through the variety of work that AMEND undertakes, different forms of information may be collected from you at different times, and retained. In all cases, we DO NOT pass on your contact details to any third party unless you give us permission to do so, and any contractors employed at any time who may, for reasons beyond our control, have access to information are required to sign a confidentiality agreement.

    AMEND holds three types of information which are covered by this policy:

    • Organisational information – publicly available information about organisations
    • Personal information – information about individuals such as names, addresses, telephone numbers and email addresses
    • Sensitive personal information – in additional to contact information, AMEND may also hold sensitive information such as members’ medical conditions and bank or credit card details


    • Cookies

    Cookies are pieces of data created when you visit some websites, and are stored in the cookie directory of your computer. Cookies are created when you visit this website and use some of the facilities e.g. the shop. The cookies do not contain any personal information about you, and they cannot be used to identify an individual user. You can set your browser not to accept cookies, however if you do some parts of this site will not work correctly, e.g. text sizing.

    • Log Files

    Log files allow us to record visitors’ use of the site. We analyse log file information from all our visitors and use it to make changes to the layout of the site and to the information in it, based on the way that visitors move around it. Log files do not contain any personal information and they are not used to identify any individual patterns of use of the site.

    • External Links to Other Sites

    The AMEND website contains links to other websites. This privacy policy applies only to our site. When you move to another site, read the privacy statement for that site where personal information is collected. We do not pass on any personal information you have given us to any other site.

    If this privacy policy changes in any way, we will place an updated version on our website in the appropriate place. Regularly reviewing this page ensures that you are always aware of the information that we collect, how we use it, and under what circumstances, if any, we will share it with other parties.

    Any details you supply to us are held in strict confidence and in accordance with the General Data Protection Regulations 2018 and the UK Data Protection Act 1998. If you state you are happy for us to hold your details we may from time to time contact you either by phone, post or email about our work at the association or to update the information we hold on you. Should you prefer us not to contact you in this way, please contact us using the email facility on the website, or write to us at the following address: AMEND, The Warehouse, Draper Street, Southborough, Tunbridge Wells, Kent, TN4 0PG.

    A copy of AMEND’s Data Protection Policy is available to view on request.

    All individuals who are the subject of personal data held by AMEND are entitled to:

    • Ask what information the charity holds about them and why
    • Ask how to gain access to it
    • Be informed how to keep it up to date
    • Be informed how the charity is meeting its data protection obligations

    Requests for your personal data should be made by email, addressed to the CEO who will aim to provide the relevant data within 14 days. This process is subject to verification of your identity prior to handing over any information.

    In certain circumstances, data protection laws allow personal data to be disclosed to law enforcement agencies without the consent of the data subject. Under these circumstances, AMEND will disclose requested data. However, the CEO will ensure the request is legitimate, seeking assistance from legal advisors where necessary.