Association for Multiple Endocrine Neoplasia Disorders

INTRODUCTION

AMEND is a patient support group run by volunteers for the benefit of everyone affected by the multiple endocrine neoplasia disorders and their associated familial and sporadic growths. In addition to providing worldwide email and telephone support, AMEND runs a well-respected website, a MEN Research Registry and produces patient information with the support of a strong international medical advisory team. AMEND became a registered UK charity in 2002 regulated by the UK Charity Commission.

BACKGROUND TO POLICY

AMEND are committed to ensuring that anyone using its services maintains the level of privacy to which they are entitled. This is particularly important when dealing with genetic conditions such as multiple endocrine neoplasia. Under the UK Data Protection Act, 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.

INFORMATION WE COLLECT

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 General Database

AMEND maintains a database containing comprehensive details on full members, honorary members, medical members and other interested parties. Patient member details include detailed medical histories and all entries contain contact information. Details are only retained with each member’s permission whilst they are members and for 3 months after cancelling membership whilst we try to gain feedback on the reasons for cancellation.

AMEND Research Registry

In addition to the Registrant’s Database, AMEND also maintains a database of those patient members and non-members who wish to be involved in medical research. Detailed medical and contact details are retained unless at any time a participant requests their removal, at which point they are immediately deleted. Registrants are asked annually if they wish to remain on the database.

AMEND Telebuddy Service/Call Reports

All Telebuddy scheme volunteers are supplied with the AMEND Telebuddy Procedures and limited amount of personal information and contact details sufficient to make their telephone calls to patients who have indicated their willingness to be contacted on their registration forms.

AMEND Website

We collect different kinds of information from visitors to amend.org.uk including:

- Feedback
- Brief medical histories (for patient membership applications)
- Registration contact details (for access to various parts of the site e.g. discussion forum)
- Site usage information, from cookies and log files

Site usage information

- 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. if you take part in a poll. 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 or our discussion system.

- 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.

What happens when I link to another site?

Amend.org.uk 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.

COMMENTS AND QUESTIONS

If you send an email or letter via the AMEND website or otherwise asking for information, we may need to contact organisations or individuals to find the answer. We do include your anonymous personal information when dealing with your enquiry. When a member of the AMEND team has replied to you, they may keep a record of your message indefinitely for reference and audit purposes or if AMEND deems your query to be of potential use to others in the future. If you do not wish AMEND to keep such a record, please notify us in writing at the following address: AMEND, The Warehouse, Draper Street, Royal Tunbridge Wells, Kent, UK, TN4 0PG.

WHAT HAPPENS WITH THE INFORMATION I SUPPLY TO YOU?

Any details you supply to us are held in strict confidence. 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. Should you not wish us to contact you in this way, please notify us in writing at the following address: AMEND, The Warehouse, Draper Street, Royal Tunbridge Wells, Kent, TN4 0PG.