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.
The primary way in which we collect your personal information is, if you choose to contact us, using the contact function – https://www.ttpnetwork.org.uk/contact/#
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.
When someone visits https://www.ttpnetwork.org.uk 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.
The TTP Network will only use your information in the following ways:
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.
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.
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 email@example.com
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).
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.