Privacy Policy

The PBC Foundation (UK) Limited

Privacy Policy

Legal Disclaimer
Our website and our app were designed specifically for those affected by PBC. Information provided to you by PBC Foundation does not replace the need for a consultation with a clinician. Please note that the views expressed on our website and in this app are not necessarily the views and opinions of PBC Foundation (UK) Ltd.

Every effort has been made to ensure the information given is accurate however, no legal responsibility is accepted for any omissions, errors or potentially misleading statements.

Privacy Notice


Legal Disclaimer 1

Contact details. 1

How do we use your information?. 2

Members. 2

App Users. 2

Website users. 2

Cookies. 2

Recipients of data. 3

Sharing anonymised data. 3

Payments made through our Website. 3

Other Recipients. 3

Data security. 3

Your rights. 4

This privacy notice tells you what to expect when PBC Foundation uses personal data.  It applies to information we collect in carrying out our work to support those affected by PBC.

PBC Foundation is a charity which offers support and information to PBC sufferers, their families and friends.

Contact details
a: PBC Foundation (UK) Ltd, 2nd Floor, 6 Hill Street Edinburgh EH2 3JZ


t: 0131 556 6811

How do we use your information?

When you join as a member we will ask you to provide contact information and information about how you would like us to contact you. This data will be used to provide you with the services you sign up for as a member.

If you ask for a Regional Volunteer to contact you then we will pass only your contact information to that person. They will only use it to contact you about the services we can provide to you as a member of PBC.

App Users
As a member you can access and download our PBC Foundation App designed exclusively to provide further support to our members and help them to self-manage their PBC. The app carries a huge amount of information within it as well as many self-management tools.  It has trackers for things such as symptoms, blood tests, medications, and moods. You will also be able to participate in our International Patient Registry, ensuring your voice is heard and is part of leading the next generation of PBC research.

There is a database of information that our members have provided. This database also contains information that your provide to us through your membership account. It is stored securely on a database hosted in the UK by our trusted partner MTC Media Limited. We have a contract in place with this company to ensure that they only store and use your data in line with our instructions; that it is held securely and that it will be securely erased on request.

Your personal data is only used by PBC Foundation to administer support to you and to help you self-manage your condition.

Website users
When you use the PBC Foundation website, we use technology to collect information indirectly – such as your Internet Protocol (IP) address. This is commonplace across all internet services to enable the investigation of issues such as malicious use. This information is then kept in our internet access logs.

If you use our online form to ask a particular question then we will use your personal data to respond to your question and for no other reason.

We also collect information about you by using cookies. Cookies are small files of information that save and retrieve information about your visit to our site, such as how you entered our site, how you navigated through the site and what information was of interest to you. This information is collected for a number of reasons, for example, to help us develop our website and associated services.

The cookies we use identify you merely as a number. If you are uncomfortable about the use of cookies, you can disable them by changing the settings in the preferences or options menu in your internet browser. However, disabling cookies may affect our ability to provide services to you; if certain cookies are disabled you may not be able to access the service.

See our seperate Cookies Notice for more information on the Cookies we use.

Recipients of data

Sharing anonymised data
From time to time information from the PBC Foundation database will be shared in a completely anonymised way. This allows PBC Foundation to share information about PBC with trusted third parties whose aims align with ours, to understand more about PBC and to assist PBC sufferers. When we say this data is anonymised, this means it is not possible for the third parties to link our members to any of the information that they obtain through PBC Foundation. PBC Foundation ensures that legal safeguards are in place as well.

PBC Foundation is able to continue to provide its services through funds raised in this way. If you have any concerns or questions about this, please do not hesitate to get in touch using the contact details above.

Payments made through our Website
We use third party payment service providers Worldpay and PayPal to process your financial data if you donate money to us. PBC Foundation does not process any of your financial data.

Other Recipients
The data you provide to PBC through our website as a member or through our app is stored securely on a party database hosted in the UK by a third party, MTC Media Limited. We have a trusted relationship with MTC and have a contract in place with this company to ensure that they only store and use your data in line with our instructions; that it is held securely and that it will be securely erased on request.

How long do we hold this information for?

We will hold the information for as long as we are providing you with our services.

If you cancel your membership, we will no longer contact you and will securely erase all your personal data within one year or your membership cancellation.

Data security
We will take appropriate steps to maintain the security of your personal data and in particular the health data you submit through our website and app, is held securely in our database.

The security of the PBC Foundation website and app is managed by MTC. It has the appropriate technical expertise to protect against unlawful processing and/or accidental loss of information.

Your rights
You have a number of rights in relation to your personal data. A fee will not generally be charged for exercising any of these rights unless your requests are manifestly unfounded or manifestly excessive.

  • Provide a copy of your personal data and information about how it is being processed;
  • Correct any mistakes in your personal data;
  • Delete your personal data – in certain situations; and
  • Restrict processing of your personal data – in certain circumstances, e.g. if you contest the accuracy of the data.

You can object:

  • At any time to your personal data being processed for providing you with information and updates about our services; and
  • In certain other situations to our continued processing of your personal data, e.g. processing we are carrying out where we claim it is for the purpose of our legitimate interests and your rights outweigh our interests.

If you would like to exercise any of those rights, please email us using the contact details above.

PBC Foundation wants to ensure that its users and members and comfortable about the way that it processes personal data. For this reason, we would like to answer any queries or concerns you have about the way we handle your personal data. Please use the contact details above to contact us.

However, if you are still unhappy with the way that we have dealt with your personal data then you can contact the Information Commissioner. Contact details are available at

Links to other websites

The social media sites that PBC Foundation links to are third-party sites and PBC Foundation does not control the way these sites use your information. If you choose to access these sites using the links provided, the operators of these sites may collect information from you that may be used by them in accordance with their privacy policies, which may differ from ours.

You should read their privacy policies carefully to find out what happens to any information that is collected by these services when you use them.

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