Website terms and conditions

“PANS PANDAS Steering Group”, “we”, “us” and “our” means PANS PANDAS Steering Group and we are committed to respecting your privacy.

How we collect information about you

In running and maintaining our website we may collect and process the following data about you: Information about your use of our site including details of your visits such as pages viewed, length of visits and the resources that you access. Such information includes traffic data, location data and other communication data.

We will automatically collect technical information including the Internet protocol (IP) address used to connect your computer to the Internet, browser type and version,time zone setting, browser plug-in types and versions, operating system and platform,information about your visit including the full Uniform Resource Locators (URL) clickstream to, through and from our site (including date and time), page response times, download errors.

We do not collect any personal data about you through our Website. However, we may collect your personal data whenever you provide us with information, for example when you:

• submit personal information to us using our online forms;
• enquire about our activities;
• register with us;
• ask questions about PANS PANDAS Steering Group.

We may also collect your personal data where we receive information about you from third parties; however, third parties will only provide us with this information where you have given them permission to share your information.

What personal information we collect

The personal data that we may collect or process about you is:

Information that you provide to us: This includes information about you that you give us by communicating with us, whether face-to-face, by phone, e-mail or otherwise. This information may include, but may not be limited to, your name, address, contact telephone number and email address.

Information we collect or generate about you: In running and maintaining our website we may collect and process the following data about you: Information about your use of our site including details of your visits such as pages viewed, length of visits and the resources that you access. Such information includes traffic data, location data and other communication data.
We will automatically collect technical information including the Internet protocol (IP) address used to connect your computer to the Internet, browser type and version, time zone setting, browser plug-in types and versions, operating system and platform, information about your visit including the full Uniform Resource Locators (URL) clickstream to, through and from our site (including date and time), page response times, download errors.

How we use your information

Your personal data may be stored and processed by PANS PANDAS Steering Group in the following ways and for the following purposes:

• Providing you with services, products or information about the PANS PANDAS Steering Group which you have requested;
• Reporting to the appropriate legal and regulatory authorities, and complying with law;
• Managing our relationship with you (e.g. ensuring we know how you prefer to be contacted); and,
• Understanding how we can improve our services, products or information delivery.
• Profiling – to enable us to communicate with you effectively, we may sometimes use your data for analysis purposes, based on information that you have provided to us; such as location, marketing sources, behaviour and interests. We use anonymised data in all our profiling activities.

You have the right to object to our lawful processing of your information at any time, and can do so by contacting us in accordance with the “Contacting Us” section below.

Legal basis on which we process personal data

Personal data we hold about you will be processed for one or more of the following reasons:

• You have consented to the processing for the specific purposes described in this notice;
• We have legal and regulatory obligations that we have to discharge;
• We may need to in order to establish, exercise or defend our legal rights or for the purpose of legal proceedings; or,
• the processing is necessary for our legitimate interests (or the legitimate interests of a third party) unless your interests in data privacy and security override our legitimate interests.
• We do not normally collect special category or sensitive personal data. In the event you provide us with any special category or sensitive personal data, we will take extra care to ensure your rights are protected, in accordance with applicable data protection laws.

You have the right to object to our lawful processing of your information at any time and can do so by contacting us in accordance with the “Contacting Us” section below.

Disclosure of your information to third parties

We may need to share your information with third parties where we are required to disclose your identity for regulatory and legal purposes, and in order to provide you with information in relation to PANS PANDAS Steering Group or signpost you to services provided by other third parties.

We will take steps to ensure that the personal data is accessed only by employees of such companies that have a need to process your data for the purposes described in this notice.

We may also share your personal data outside of PANS PANDAS Steering Group:

• to third parties to help coordinate support for you and/or to signpost you to services provided by third parties;
• to our professional advisors and banks for the purpose of providing services to us, where we are required to disclose your identity for regulatory and legal purposes;
• if we sell any assets or solutions, in which case we may disclose your personal data to the prospective buyer for legal or regulatory purposes or if our legal structure or charity status changes, in which case personal data held by us about you will be disclosed to the new legal structure and/or charitable organisation;
• to third party agents or contractors for the purposes of providing services to us. These third parties will be subject to confidentiality requirements and they will only use your personal data as described in this privacy notice; and,
• to the extent required by law, to the police, regulatory bodies or legal advisors, for example if we are under a duty to disclose your personal data in order to comply with any legal obligation, establish, exercise or defend our legal rights.

We will never pass on your information to third party organisations without your explicit and informed consent other than for the purposes as described above. We do not sell or share personal details to third parties for the purposes of marketing.

How we keep your data safe and who has access

We take appropriate physical, electronic and managerial measures to ensure that we keep your information secure, accurate and up to date. For example, our online forms are always encrypted and our network is protected and routinely monitored.

Where we use third party companies to collect or process personal data on our behalf (as detailed above), we do comprehensive checks on these companies before we work with them, and put a contract in place that sets out our expectations and requirements, especially regarding how they manage the personal data they collect or have access to.

Retention of personal data

How long we hold your personal data for will vary. The retention period will be
determined by various criteria including:

• the purpose for which we are using it: we will need to keep the data for as long as is necessary for that purpose; and,
• legal obligations: laws or regulation may set a minimum period for which we have to keep your personal data.

We only keep your information for as long as we need to, to be able to use it for the reasons given in this privacy policy. In general terms we remove identifiable personal information from our records, in accordance with the following:

• Records relevant for tax purposes – 7 years from the end of the tax year to which the records relate
• Personal data held on marketing or business development records – 4 years from the last date on which you have interacted with us

You have the right to object to your data being processed by us and can do so by contacting us in accordance with the “Contacting Us” section below.
You can request a copy of the personal information that we hold about you under the Data Protection Act 1998. If you would like to do so, please send a description of the information you would like as well as approved proof of identity to PANS PANDAS Steering Group at the address listed in the “Contacting Us” section below.

Website cookies and how we use them

Cookies can be used to store information regarding a website visitors’ usage. Where used, cookies are downloaded onto your computer and stored on the computer’s hard drive. The information which cookies then collect is statistical data only and will not be able identify you as an individual. PANS PANDAS Steering Group website is run by Google Analytics which uses cookies to find out how people use our website in order to make improvements.

If you want to restrict or block the cookies we set, you can do this through your browser settings. The ‘help’ function within your browser should tell you how. Alternatively, you could visit www.aboutcookies.org, which contains information on the types of cookies which can be used across different browsers. You’ll also find details on how to delete cookies from your computer.
To learn about controlling cookies on the browser of your mobile device please refer to your handset manual.

Links

Our websites may include links to websites run by other organisations. PANS PANDAS Steering Group is not responsible for the privacy practices of these other websites so, in addition to reading this privacy notice, you should take the time to read and understand their privacy policies.

Your rights

You have a number of legal rights in relation to the personal data that we hold about you. These rights include:

• the right to obtain information regarding the processing of your personal data and access to the personal data which we hold about you. Once we are sure you have the right to see the requested records (for example: We have confirmed that you are who you say you are) we will have one calendar month to comply.
• the right to withdraw your consent to our processing of your personal data at any time. Please note, however, we may still be entitled to process your personal data if we have another legitimate reason (other than consent) for doing so.
• in some circumstances, the right to receive some personal data in a structured, commonly used and machine-readable format and/or request that we transmit that data to a third party where this is technically feasible. Please note that this right only applies to personal data which you have provided to us;
• the right to request that we rectify your personal data if it is inaccurate or incomplete;
• the right to request that we erase your personal data in certain circumstances. Please note that there may be circumstances where you ask us to erase your personal data but we are legally entitled to retain it;
• the right to request that we restrict our processing of your personal data in certain circumstances. Again, there may be circumstances where you ask us to restrict our processing of your personal data but we are legally entitled to refuse that request; and,
• the right to lodge a complaint with the data protection regulator (details of which are provided below) if you think that any of your rights have been infringed by us.

You can exercise your rights by contacting us using the details set out in the “Contacting us” section below.

You can find out more information about your rights, or if you would like to make a complaint, you can do so by contacting the Information Commissioner, or by searching their website at https://ico.org.uk/.

Your consent

By using our websites, social media pages, entering a competition or providing your information, you consent to our collection and use of the information you provide in the way(s) set out in this policy. If you do not agree to this policy please do not use our sites, social media pages or services

Withdrawing consent to marketing

You can opt out of receiving donation appeal letters, newsletters, emails or telephone calls from us at any time by contacting us in accordance with the “Contacting Us” section below. Please note that if you opt out of receiving specific communications then opt in again in the future, the newest request replaces any previous requests you made to opt out.

Keeping your information up to date

If your personal details change, please help us to keep your information up to date by notifying us at the address below.

Changes to this policy

We may make changes to this policy from time to time. If we do so, we will post the changes on this page and they will apply from the time we post them.

If you have any questions, comments or suggestions, please let us know by contacting us in accordance with the “Contacting Us” section below

Disclaimer

Whilst we do take all reasonable steps to make sure that the information on this Website is up to date and accurate at all times we do not guarantee that all material is accurate and/or up to date.

All material contained on this Website is provided without any warranty. You use the material on this Website at your own discretion.

Contacting us

If you would like further information on the collection, use, disclosure, transfer or processing of your personal data or the exercise of any of the rights listed above, please address questions, comments and requests at:

PANS PANDAS Steering Group c/o PANS PANDAS UK
Greville House, 10 Jury Street, Warwick, CV34 4EW
Charity Number: England – 1178484 | Scotland – SC053206
Email: info@theppsg.org.uk