DATA PROTECTION AND PRIVACY POLICY
About the Policy
SarcoidosisUK is committed to protecting your privacy. To understand how your personal information will be treated, please read the following policy.
The terms of this policy may change to reflect the changing activities and services of the charity. Please check it from time to time. We last updated it in April 2024.
If you have any queries about this policy please contact us: SarcoidosisUK, 214 China Works, 100 Black Prince Road, London, SE1 7SJ.
This policy is informed by the Data Protection Act with help from the ICO and Helplines Partnership. It has been written in accordance with the General Data Protection Regulation (GDPR).
See the SarcoidosisUK Research Participants’ Data Protection and Privacy Policy for information about how we treat any personal information and data involved with SarcoidosisUK Research.
This policy explains:
- Why we collect personal information
- How we collect personal information
- What information we collect
- Debit and credit card information
- How we use your information
- Who we share your information with
- How we protect your information
- How long we keep your information
- Your rights
- Further information and contacts
Data Protection and Privacy Policy
Why do we collect your personal information?
SarcoidosisUK uses the information it collects about you to help better administer our activities and services. This includes (but is not limited to) understanding how our website is being used, sending requested information to you or information that may be considered of interest to you and to render services you have ordered or requested.
How do we collect personal information?
Personal information is information that can be used to identify you.
You give us this when you ask about our activities; sign up to our newsletter; register with us for an event, support group, campaign or in a professional capacity; send or receive an email; make a donation; apply for a job; order products or services, such as a nurse helpline call-back, information leaflets or from our online shop; ask a question about our services; use and interact with our website or online forums; engage in research or online surveys or otherwise interact with the charity or use our services.
We may also get personal information about you from family members, friends or organisations who contact us on your behalf.
What information do we collect?
SarcoidosisUK does not collect information identifying you personally unless that information is voluntarily disclosed. The information we collect may include your name, date of birth, email address, IP address (internet protocol address), postal address or telephone number.
We may also collect personal information recognised by data protection law as sensitive, such as information about your health. We’ll only do this where there is a clear reason to do so and we’ll always make these reasons clear to you.
For more information about how we protect your information when you engage in research see our SarcoidosisUK Research Data Protection and Privacy Policy.
We gather information about our websites, such as which pages users visit most often, and which services, events or facilities are most popular. We may also track which pages users visit when they click on links in our emails.
For more information on the quality of SarcoidosisUK Information see the SarcoidosisUK Information Standards Policy.
Debit and credit card information
If you use your credit or debit card to donate to us, register for an event or buy something, online or over the phone, we will make sure this is done securely and in accordance with the Payment Card Industry Data Security Standard (PCI DSS). The payment will be processed by a third party and we will not store your card details.
Find out more about PCI DSS.
How do we use your information?
We use your personal information to give you the information, services, or products you ask for. This could be to:
- process a donation
- take part in a fundraising event or other activity
- process your order
- communicate with you, including our newsletter
- give information and advice
- handle a complaint
- provide a service
- carry out an obligation or contract
- process a grant application
- process a job application
- improve understanding of supporter base, particularly online
Who do we share your information with?
SarcoidosisUK does not disclose personal information to third parties, except as described in this Policy. Third party disclosures may include sharing information with non-affiliated companies that perform retail merchandising services for us or to facilitate card payment. Non-affiliated companies that assist SarcoidosisUK in providing services to you are required to maintain the confidentiality of such information to the extent they receive it and to use your personal information only while providing such services.
We will only share sensitive personal information eg health information, with your consent. We may ask you to agree to your information being shared within SarcoidosisUK, including with the SarcoidosisUK Nurses and our volunteers running SarcoidosisUK Support Groups.
For more information see the SarcoidosisUK Safeguarding Policy.
We reserve the right to share information with our financial and legal advisers to protect our legal rights.
How do we protect your information?
When we collect your personal information, we use strict procedures and security features to prevent unauthorised access. We also take appropriate measures to make sure the information disclosed to us is:
- kept secure, accurate and up-to-date and
- kept only for as long as it’s needed for the purposes for which it was intended.
While we do our best to protect your personal information, we cannot guarantee the security of any information you post, email or transmit by other means to us. You do so at your own risk.
How long do we keep your information?
We regularly review how long we hold personal information. We are legally required to hold some types of information to fulfil our statutory obligations (for example the collection of Gift Aid). We will hold your personal information on our systems for as long as needed by the relevant activity. If you asked us not to contact you again we would hold a record of that indefinitely. Where your information is no longer required we will dispose of it in a secure manner.
Website Disclaimer
SarcoidosisUK websites contain links to external sites. SarcoidosisUK is not responsible for any third-party content or privacy practices accessible through this website. We do not endorse any of the companies or opinions listed in or linked to or from the website. We also do not accept or host any advertising. For the full website disclaimer, see our website.
Your Rights
You have the following rights in relation to your personal information.
At any time you can:
- cancel or modify your information by contacting the SarcoidosisUK office (info@sarcoidosisuk.org)
- ask for a copy of the personal information we hold about you and for us to correct any inaccuracies
- request us to erase your personal information; to restrict our processing of your personal information, or to object to our processing of your personal information.
If you want to exercise these rights, please email info@sarcoidosisuk.org. Depending on the request, it may be necessary to send copies of 2 separate identification documents such as a passport, driving licence, or utility bill. The first should give photo identification and the second confirm your address. Please also give information about the nature of your contact with us, to help us locate your records. Alternatively, you can send the documents by post to: SarcoidosisUK, 214 China Works, 100 Black Prince Road, London, SE1 7SJ.
We will respond within 30 days, once we receive your written request and copies of your identification documents.
We reserve the right to charge an administration fee for excessive or manifestly unfounded requests.
Further Information and Contacts
Other Related SarcoidosisUK Policies
- SarcoidosisUK Research Data Protection and Privacy Policy
- SarcoidosisUK Information Standards Policy
- SarcoidosisUK Safeguarding Policy
- SarcoidosisUK Nurse Helpline Service Standards (including Confidentiality and Data Protection Policy, Safeguarding Policy and Information Standards Policy)
For more information about this Policy please contact:
Graham Bloye
214 China Works
100 Black Prince Road
London
SE1 7SJ
020 3389 7221
The Data Protection Regulator:
You can get more information and advice about data protection or reporting a concern about data protection from:
Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
SK9 5AF
Helpline: 0303 123 1113
From outside the UK: +44 1625 545 745