Privacy Policy
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The PBC Foundation is the only UK based organisation that specifically deals with PBC.

Privacy Policy

Privacy Policy

The PBC Foundation (UK) Limited

Privacy Policy


Thank you for visiting (our site).

PBC Foundation (UK) Limited, registered charity number SC025619 and registered company number SC207493, having its registered office at 6 Hill Street, Edinburgh, EH2 3JZ ("We") are committed to protecting and respecting your privacy and are the data controller for the purposes of the Data Protection Laws.

This policy (together with our terms of use and any other documents referred to on it) sets out the basis on which any personal data we collect from you, or that you provide to us, will be processed by us. 

 Data Protection Laws comprise any law, statute, subordinate legislation, regulation, order, mandatory guidance or code of practice, judgement of a relevant court of law, or directives or requirements of any regulatory body which relates to the protection of individuals with regard to the processing of Personal Data to which a party is subject including the Data Protection Act 1998 (until its repeal) or the Data Protection Act 2018 (as applicable), the Privacy and Electronic Communications (EC Directive) Regulations 2003 and Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 (“GDPR”).

Please read the following carefully to understand our views and practices regarding your personal data and how we will treat it. By visiting our site, you are accepting and consenting to the practices described in this policy.



We may collect and process the following data about you:

a.       Information you give us: you may give us information about yourself by filling in forms on our site or by corresponding with us by phone, e-mail or otherwise. This includes information you provide when you register to use our site, subscribe to our service, search for a product, place an order on our site, make a donation, participate in discussion boards and other social media functions on our site, enter a competition, promotion or survey, and when you report a problem with our site. The information you give us may include your name, address, e-mail address and phone number, financial and credit card information, personal description, medical details and photograph.



With regard to each of your visits to our site we may automatically collect the following information:

a.       Technical information: this includes the Internet protocol (IP) address used to connect your computer to the Internet; your login information; browser type and version; time zone setting; browser plug-in types and versions; operating system and platform.

b.      Information about your visit: this includes the full Uniform Resource Locators (URL) clickstream to, through and from our site (including date and time); products you viewed or searched for; page response times; download errors; length of visits to certain pages; page interaction information (such as scrolling, clicks, and mouse-overs); and methods used to browse away from the page and any phone number used to call our office telephone number.



We use information about you in the following ways:

a.       to carry out our obligations arising from any contracts entered into between you and us and to provide you with the information, products and services that you request from us;

b.      to provide you with information about services we feel may interest you. If you are an existing registered service user, we will only contact you by electronic means (e-mail) with information about services similar to those previously provided to you. If you are a new registered service user we will contact you by electronic means only if you have consented to this. If you do not want us to use your data in this way, please e-mail;

c.       to notify you about changes to our service;

d.      to ensure that content from our site is presented in the most effective manner for you and for your computer;

e.      to administer our site and for internal operations, including troubleshooting, data analysis, testing, research,  statistical and survey purposes;

f.        to improve our site to ensure that content is presented in the most effective manner for you and for your                computer;

g.       to allow you to participate in interactive features of our service, when you choose to do so;

h.      as part of our efforts to keep our site safe and secure;

i.         to measure or understand the effectiveness of advertising we serve to you and others, and to deliver relevant advertising to you;

j.        to make suggestions and recommendations to you and other users of our site about goods or services that may interest you or them.


Change of use

We will only use your personal data for the purposes for which we collected it, unless we reasonably consider that we need to use it for another reason and that reason is compatible with the original purpose. 

If we need to use your personal data for an unrelated purpose, we will notify you and we will explain the legal basis which allows us to do so.

Please note that we may process your personal data without your knowledge or consent, in compliance with the above rules, where this is required or permitted by law.



We may share your information with selected third parties including analytics and search engine providers that assist us in the improvement and optimisation of our site.

In the event that your information is shared in this manner then it will be anonymised.

Your information may also be disclosed if we are under a duty to disclose or share your personal data in order to comply with any legal obligation, or in order to enforce or apply our terms of use (and terms and conditions of purchase of products) and other agreements; or to protect the rights, property, or safety of The PBC Foundation, our registered service users, or others. This includes exchanging information with other companies and organisations for the purposes of fraud protection and credit risk reduction.



We will take all steps reasonably necessary to ensure that your data is treated securely and in accordance with this privacy policy.

All information you provide to us is stored on our secure servers. Where we have given you (or where you have chosen) a password which enables you to access certain parts of our site, you are responsible for keeping this password confidential. We require you not to share a password with anyone.

Once we have received your information, we will use strict procedures and security features to prevent unauthorised access.



You have the right to ask us not to process your personal data for marketing purposes. We will inform you (before collecting your data) if we intend to use your data for such purposes or if we intend to disclose your information to any third party for such purposes. You can exercise this right at any time by contacting us at

Our site may, from time to time, contain links to and from the websites of our partner networks, advertisers and affiliates.  If you follow a link to any of these websites, please note that these websites have their own privacy policies and that we do not accept any responsibility or liability for these policies.  Please check these policies before you submit any personal data to these websites.



The Data Protection Act gives you the right to access information held about you. Your right of access can be exercised in accordance with the Act. Any access request may be subject to a fee of £10 to meet our costs in providing you with details of the information we hold about you.



Any changes we may make to our privacy policy in the future will be posted on our website and, where appropriate, notified to you by e-mail. Please check back frequently to see any updates or changes to our privacy policy.



Questions, comments and requests regarding this privacy policy are welcomed and should be addressed to