Please read our privacy policy.
The TTPNetwork is a patient-led organisation run by volunteers, many of whom have TTP. At TTPNetwork, we are committed to building and maintaining the trust and confidence of our visitors to the web-site.
We want you to know that TTPNetwork 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 TTPNetwork and how we keep it secure. We are a very small organisation though we treat your information as we would our very own.
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-us
As a visitor to our web-site you may use this to express an interest in the TTPNetwork 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.
Cookies
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 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 TTPNetwork 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 TTPNetwork 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 TTPNetwork’s data protection officer is responsible for receiving, managing and handling the personal information you share with the TTPNetwork. 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 TTPNetwork administration team to assist in supporting the TTPNetwork Buddy Scheme and relevant TTPNetwork 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 info@ttpnetwork.org.uk
If there is a breach of the secure systems that hold your data then the TTPNetwork 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 5th December 2024 We value your trust in sharing your personal information with us and we will review our policy in 12 months – December 2025.
