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AKPA Privacy Notice


At Addenbrooke’s Kidney Patients Association (AKPA) we are committed to protecting your personal information and ensuring you have control over the information we store about you and the type of information you would like to receive from us.


How we collect personal information about you

We may collect personal information directly from you when you interact with AKPA, for example: if you sign up to be a member, make a donation to us, give feedback to us, or otherwise provide us with personal information. This may take place when you call us, send us a letter or email us.


What information do we collect?

The personal information we collect might include your contact details such as name, email address, postal address, telephone number, as well as information you provide in any correspondence with us. 


If you are applying to be a Trustee or as a trusted volunteer we may collect further information about your employment history, eligibility for employment in the UK, and your eligibility to work with vulnerable individuals. 


How do we use your personal information?

We may use your personal information to:

  - Provide you with information about AKPA’s activities

  - Provide you with fundraising updates and activities for your consideration;

  - Provide it to a trusted printing company for printing labels for our newsletter and fundraising materials (e.g. raffle tickets)

  - If you are a member, share it with the National Kidney Federation (NKF) so they can provide you national level kidney related information.

  - We may need to disclose your information if required to do so by law (for example, to comply with applicable laws, regulations, and codes of practice or in response to a valid request from a competent authority).


To do some of this, AKPA may share your information with our trusted partners and suppliers. This may be as they deliver part of our service (e.g. masseuse for post-transplant patients). However, we will get your consent prior to sharing this data, that the processing is always carried out under our instruction, and that it is never for their marketing approaches. We ensure that they store the data securely and delete it when it is no longer needed.


We will not use your personal information to:

  - Profile your wealth, which involves collecting external sources of information about you, the area where you live, or people like you, to target you for a specific donation amount;

  - Sell to third parties for any marketing activities;

  - Transfer your personal information outside of England.


We will work to ensure the personal information we hold is up-to-date and accurate. We will periodically contact you to maintain our records and to provide an opportunity for you to update your consent to be contacted by us. We will ask you to re-consent within five years.


Your personal information is stored in a secure electronic file for no longer than is necessary for the purposes of its use. 


Who sees your personal information?

The personal information we collect about you is held in a secure file by an AKPA Trustee designated as the Data Protection Officer. It will be shared with other AKPA committee members or a trusted volunteer for a specific activity (and they will delete it immediately the task is completed). All AKPA people accessing your information are aware of the requirements of data protection and privacy so they follow the correct procedures to keep your information safe.


Legal and regulatory authorities may see your information, only if it is required by law. Where we report to funders about our services, we will only use anonymised information and will look to aggregate information to protect your identity.


How do we secure your information?

We have implemented appropriate physical, technical, and organisational measures to protect the personal information we have collected from improper access, use, alteration, destruction, and loss.


Your personal information is kept securely with a nominated Trustee in an encrypted database on their PC. The Trustee maintains the security of the PC against external attack and malware. Processes are in place which only permit access to personal information by approved committee members and trusted volunteers.


Please be aware, our website may contain links to other sites. While we try to link only to sites that share our high standards and respect for privacy, we are not responsible for the content or the privacy practices employed by other sites. Please be aware that advertisers or Web sites that have links on our site may collect personally identifiable information about you. This privacy statement does not cover the information practices of those websites or advertisers.


Your choice

We respect your right to control what personal information we hold about you and you can change your mind at any time. You can remove or add your consent to what personal information we hold, how we can contact you, and what information you would like to receive from us. If you are a member any changes to your contact details will be advised to the NKF. Please see the section below for details on how to update or access your personal information.


How to update or access your personal information

You may ask us at any time to update, correct, or remove personal information we hold. You also have a right to know what personal information AKPA holds about you. To request any changes or receive a copy of your personal information, contact us by:


Writing to: AKPA Data Protection Officer, 10 Craven Close, Trumpington, Cambridge, CB2 9NW

Calling: 01223 564752



We will reply all requests within one month, but will aim to reply much faster depending on the number of requests.


Concerned about our information rights practices?

If you have any concerns about how our information rights practices, please first contact our Data Protection Officer by:


Writing to: AKPA Data Protection Officer, 10 Craven Close, Trumpington, Cambridge, CB2 9NW

Calling: 01223 564752



Any complaint will be treated seriously and thoroughly investigated. You will be kept informed at all stages of the process. Having received your complaint, the following will happen:

  - We will acknowledge any complaint within five working days of receipt.

  - We should normally let you know the outcome within two weeks.

  - We will keep you informed of the progress if the matter takes longer than two weeks to resolve.


If the fault lies with us, we will ensure that matters are put right as soon as possible. We will inform you and give a full explanation, both of how the fault occurred and how we aim to change things so that a similar difficulty will not happen in the future.


Should you remain dissatisfied with the way that you have been treated by the charity or the way your complaint has been handled, please write to the Chairman of the Board of Trustees of AKPA who are the governing body of the charity. You can contact the Chairman by writing to: AKPA Chairman, 23 Constable Road, Haverhill, Suffolk, England, CB9 7FQ


The matter will then be dealt with at the next meeting of the Board of Trustees. You will be fully informed of the outcome within two weeks of the meeting. All complaint information will be handled sensitively, telling only those who need to know.


If you still do not feel the issue has been resolved, you can contact the Information Commissioner’s Office, using the details below:


Information Commissioner's Office. Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF

Telephone: 0303 123 1113



Changes to our Privacy Policy

Our Privacy Policy is reviewed regularly to ensure that it reflects how we use your information. Any changes will be notified to you by updating this policy so please check this Policy to see if any changes have been made that are important to you. Where appropriate, changes will be notified to you through our newsletter.


This Privacy Policy was last updated on 24th January 2018.


Who we are

The Addenbrooke’s Kidney Patients Association (“AKPA”) is a registered charity with the Charity Commission for England and Wales (charity number: 277236) and is a registered company limited by guarantee with Companies House (company number: 01393034).


If you would like any further information about our privacy practices, please contact our Data Protection Officer by:


Writing to: AKPA Data Protection Officer, 10 Craven Close, Trumpington, Cambridge, CB2 9NW

Calling: 01223 564752



Issue 1: March 2018






The AKPA website is provided by Addenbrooke's Kidney Patients for Addenbrooke's Kidney Patients and is for information purposes only. It should not be a substitute for professional medical advice,

examination, diagnosis or treatment. Do not disregard or delay seeking medical advice based on information on this site. If you have concerns, always seek the advice of one of the Renal Team

at Addenbrooke's before starting any new treatment or making any changes to existing treatment. Medical information and the staff in the Renal Department change occasionally and while AKPA make

efforts to continually update the content on the site, some information may be out of date. To advise us of incorrect information, please email


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