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Privacy Policy

Please read our privacy policy.

TTP Network Privacy Notice

The TTP Network is a patient-led organisation run by volunteers, many of whom have TTP.  At the TTP Network, we are committed to building and maintaining the trust and confidence of our visitors to the web-site.

We want you to know that the TTP Network is about supporting patients and families affected by TTP and that any information you share with us is treated with the utmost respect and confidentiality – we are not going to share email lists with any other organisation.


This Privacy Policy includes information on when and why we collect your personal information, how we use it, the conditions under which we may disclose it to others in the TTP Network and how we keep it secure. We are a very small organisation though we treat your information as we would our very own.  

When do we collect your personal information?

The primary way in which we collect your personal information is, if you choose to contact us, using the contact function –

As a visitor to our web-site you may use this to express an interest in the TTP Network buddy scheme; to offer your services as a volunteer; to find out about fundraising opportunities, such as sponsored walks; the purchase of TTP Network promotional items, such as wristbands; or you may simply wish to get in touch with us.

By completing the form you are sharing your name; email and certain other information with us and on verification, with yourself, of your contact with us we will store your information.    

We currently store email address; name; town of location; brief summary of your experience of TTP; and who, in the TTP Network, we matched you with as a buddy.    

What other types of information we collect?


Our websites use cookies to collect information.  This includes information about browsing behaviour by people who access our website. This includes information about pages viewed and your journey around our website.

Google analytics

When someone visits we use a third party service, Google Analytics, to collect standard internet log information and details of visitor behaviour patterns. We do this to find out things such as the number of visitors to the various parts of the site. This information is only processed in a way which does not identify anyone. We do not make, and do not allow Google to make, any attempt to find out the identities of those visiting our website.

How do we use your personal information?

The TTP Network will only use your information in the following ways:

  • To contact you about your interest in the TTP Network Buddy scheme and your interest in volunteering with the TTP Network
  • To send you relevant messages and information about the TTP Network Buddy Scheme; volunteering; and fundraising opportunities
  • To send you messages about TTP Network buddy opportunities and only infrequently will ask you about your experience of being a TTP Network buddy
  • To send you messages about topics and news relevant to the TTP Network

Under what conditions would we share your information?

We will never share your information with any other organisation. We may infrequently contact you, if we receive approaches from NHS organisations; research institutions and pharmaceutical companies. If the TTP Network is approached then we will make appropriate enquiries to ensure we are satisfied that this is a legitimate and ethical approach – only then will we contact you and seek your permission to put you in contact with the NHS organisation; research institution or pharmaceutical company.

How do we store your personal information?

Our data protection officer is Jo M.

The TTP Network’s data protection officer is responsible for receiving, managing and handling the personal information you share with the TTP Network. Your data is kept stored securely in a unique password protected spreadsheet on a password protected personal computer. The data protection officer will share the information within the TTP Network administration team to assist in supporting the TTP Network Buddy Scheme and relevant TTP Network communications. We will share your information in a secure manner and will store your data securely.

How do I access the personal information you hold about me?

You are entitled to view, amend, or delete the personal information that we hold.

Please email your request to our data protection officer – Jo M. at

What happens in the event of a data breach?

If there is a breach of the secure systems that hold your data then the TTTP Network will notify the Information Commissioners Office (ICO) and you within 30 days of discovering the breech. (In practice we will endeavour to do it immediately).

Changes to this Privacy Notice

We have prepared this Privacy Notice and published it on 22nd September 2023 We value your trust in sharing your personal information with us and we will review our policy in 12 months – Sept 2024.