At Sarcoma UK we are committed to protecting your privacy. This policy sets out how Sarcoma UK uses and protects the personal information you share with us, including data we collect from your use of our website or in other communications with you.

Sarcoma UK is the Data Controller (ICO registration number Z2577910) for personal data about anyone who shares information with us. This includes supporters, fundraisers, donors, patients, carers, researchers, volunteers, grant applicants, event attendees and newsletter subscribers.  This Privacy Policy sets out how we protect the information shared by each of these groups in the sections below. 

Sarcoma UK uses providers based in the European Economic Area and the United States of America to process supporter data.

This policy was updated in May 2018 in adherence to the new General Data Protection Regulation (GDPR), which came into force on 25 May 2018.

Please email dataprotection@sarcoma.org.uk for any data protection queries.


Your Rights
As an individual whose personal data is processed by Sarcoma UK you have the following rights:

  • the right to be informed – which is what this Privacy Policy is for
  • the right to access the data we hold about you (Subject Access Request or SAR)
  • the right to object to direct marketing
  • the right to object to processing carried out on the basis of legitimate interests
  • the right to erasure (in some circumstances)
  • the right of data portability
  • the right to have your data rectified if it is inaccurate
  • the right to have your data restricted or blocked from processing.

Requesting access to the data that Sarcoma UK holds about you is free of charge. We will respond to your request within 1 month which is in-line with the updated 2018 General Data Protection Regulations.

If you would like to exercise any of these rights, please email dataprotection@sarcoma.org.uk or write to us at:

Freepost RTAA-JJEE-XAUG
Sarcoma UK
49-51 East Road
London
N1 6AH


If you are not happy with the way we have handled your data, and are unable to resolve the issue with us directly, you can complain to the ICO.

Any changes to the terms of this Privacy Policy will be posted here.


How we process and store your data
Depending on the method you use and your reason for contacting us, we may collect the following types of information:

  • name, title/s and full postal address
  • contact details such as email addresses, social media links and telephone numbers
  • your date of birth
  • information relating to events you may organise such as the event date, the donation collection method, records of the money raised
  • information relating to your health – for example if you are taking part in a high risk event such as the London Marathon
  • how you heard about us
  • what kind of connection you have with Sarcoma UK
  • why you have decided to donate to us although we will never make this question mandatory, and fully understand if you are not comfortable telling us
  • your feedback from our services or dealings with us
  • contact notes relating to your involvement with the charity or are considering having with our cause
  • any photographs you share with us or we take of you or your event are also classed as data, and we will only use them with your consent. For more information please email marketing@sarcoma.org.uk

We only store and process your data where there is a lawful and legitimate basis to do so, in compliance with regulations which have been summarised by the Information Commissioner’s Office (ICO). We do not sell any of your information.

We may use your information to:

  • provide you with the services, products or information you have requested
  • administer your contact details and give you the opportunity to change your preferences as well as amend errors and update your data
  • manage donations (including processing Gift Aid)
  • support your fundraising activities
  • contact you about opportunities to volunteer for Sarcoma UK
  • keep a record of your relationship with us, including your feedback to understand how we can improve our services, products or information
  • ensure we know how you prefer to be contacted and respond to requests to be removed from certain mailing lists, opt-out of any specific data processing, or if you have special requirements
  • screen and analyse our supporters against a demographic database for the purpose of segmentation, so that we can efficiently and cost-effectively fundraise, and ensure the most suitable level of marketing is carried out across our entire supporter base


Quick access to other sections of this privacy policy:
Wealth screening, data analysis and updating your contact details
Sarcoma UK Support Line
Donors and Fundraisers
Contact form users
Mailing list subscribers
Facebook users
Twitter, Instagram and YouTube users
Third Party Platform Users
Website visitors
Researchers and Sarcoma UK research grant applicants 
Employees and job applicants
Survey responders
Event attendees


Wealth screening, data analysis and updating your contact details
Sarcoma UK may gather information about you from publicly available sources – for example, Companies House, the Electoral Register and the media – to help us to understand more about you as an individual and your ability to support the organisation, including financially.

We may carry out wealth screening, a process which uses trusted third-party partners to automate some of this work. You will always have the right to opt-out of this processing. We may use information gathered from public sources alongside the information you provide to undertake analysis of who might support Sarcoma UK and to understand the preferences of our supporters about events, communication and services.  By doing this, we can focus conversations we have with you about fundraising and volunteering in the most effective way, and ensure that we provide you with an experience as a donor or potential donor which is appropriate for you.

We also use publicly available sources to carry out due diligence on donors to meet money laundering regulations.

We may carry out projects to find new contact details for supporters with whom we are not in contact to ensure that Sarcoma UK can remain in touch with as many of its supporters as possible, in line with guidance from the Institute of Fundraising and the Information Commissioner’s Office.

If you provide us with contact details for a particular method of communication we will assume that you have given us your consent for us to update your record and communicate with you using this information, unless you have told us otherwise.  Contact details provided directly by you will update any previous preferences in relation to this channel unless you inform us otherwise.

Fundraising is a key part of Sarcoma UK’s work, and we are committed to working in a transparent, ethical, responsible and honest way. To reflect this commitment, we are a member of the Fundraising Regulator and committed to the Regulator’s Code of Practice.
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Sarcoma UK Support Line
The support line telephone and email services are confidential between you and the Support Line Team at Sarcoma UK.  If you contact the support line you may choose to provide personal information which will only be used for the purposes of dealing with your enquiry.

We use a company called Call Handling which provides Sarcoma UK with its support line Freephone number and telephony technology requirements. Call Handling is ISO 27001 Accredited with no public facing access to any data, which means your information is not shared outside of the Sarcoma UK Support Line Team.

We record details from support line email requests and callers for research and statistical purposes (all data is anonymised when carrying out data audits). Confidential information is only recorded where it falls under Recital 53 of the GDPR, which states that special categories of personal data which merit higher protection should be processed for health-related purposes only where necessary to achieve those purposes for the benefit of natural persons and society as a whole. Find out more information about what to expect when contacting the Sarcoma UK Support Line.

All details of calls and emails recorded are kept confidentially and securely stored on our database - these records are only accessible to the Sarcoma UK’s Support Line team. For more information, please see Sarcoma UK’s Support Line Confidentiality Policy.

Emails and phone conversation notes are immediately destroyed once the necessary information is confidentially stored on your record within our database. 

If for any reason you wish to have your personal details removed from our records just let us know by emailing supportline@sarcoma.org.uk.

We record support line data on our Raiser’s Edge database, which is provided by supplier Blackbaud and hosted in the US. Blackbaud stores its data in the US and complies with both the EU-U.S. Privacy Shield Framework and the Swiss – U.S. Privacy Shield Framework. To learn more about the Privacy Shield Framework, visit the U.S. Department of Commerce’s Privacy Shield List.

Any personal information provided will not be passed onto anyone else without your express permission except in circumstances to comply with the nurses’ code of professional conduct or the law.  Examples of this might include anyone reporting potential serious self-harm, if it was felt a child may be at risk or anyone expressing the intention of harming someone else. Concern will be escalated to a member of the senior management team and appropriate agency informed.

Details of calls are recorded and monitored for training purposes. This is an important part of maintaining the information line service. Occasionally another member of the Sarcoma UK Support Line team may be listening in to the call. If this is the case, it will be made clear to you at the beginning of the call. If you would prefer this not to happen please just let us know by emailing supportline@sarcoma.org.uk.
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Donors and Fundraisers
Donation Form users:

We collect personal information when you donate to Sarcoma UK via our donation form which is directly stored in our database (including your contact preferences). We use Online Express (which is within the Raiser’s Edge database provided by our supplier Blackbaud) to record and process your donation information. Online Express is PCI compliant and uses SSL encryption to protect data entered into the donation form, ensuring that the connection between the donor’s web browser and Blackbaud’s servers is secure and protected.

Donor bank, credit card and payment details are securely processed, encrypted and stored by our merchant service provider, Blackbaud, who processes your donation on behalf of Sarcoma UK and sends an automated confirmation email to you and Sarcoma UK for all transactions. Sarcoma UK does not have access to full payment information.

Blackbaud stores its data in the US although it complies with the EU-U.S. Privacy Shield Framework and the Swiss – U.S. Privacy Shield Framework. 

Donating by cheque, bank transfer or cash:

When you donate to Sarcoma UK by either sending cheques through the post, making a bank transfer, using a charity voucher agency or a cash payment, we also securely store these donation details within the Raiser’s Edge database provided by our supplier Blackbaud).

We will only contact you to thank you, however, if you inform us that you would like to hear from us, you will be added to our email subscriber list and will receive regular updates and fundraising opportunities.

You can change your contact preferences at any time by emailing info@sarcoma.org.uk or by writing to us at:

Freepost RTAA-JJEE-XAUG
Sarcoma UK
49-51 East Road
London
N1 6AH

We are required by law to retain the details of financial transactions for 6 years after the financial year of a donor’s last gift, in the event of a Gift Aid, tax or banking enquiry.
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Contact form users
If you get in touch with us via the contact form on the website, we will save the details you share with us (including your contact consent preferences) on our database. We will provide you with the information you have requested, and record these details both for statistical and also logistical purposes (stock-keeping of our various sarcoma information booklets).

If we get in touch with you in future, we can refer to our previous correspondence to help us provide you with a personalised service.

You can change your contact preferences at any time by emailing info@sarcoma.org.uk or by writing to us at:

Freepost RTAA-JJEE-XAUG
Sarcoma UK
49-51 East Road
London
N1 6AH

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Mailing list subscribers
You will only receive information that you have opted-in to receive. Depending on your preferences, we will contact you about:

  • campaigns and events
  • research updates
  • services, products or information you have requested
  • news from the sarcoma community
  • ways to get involved
  • new fundraising campaigns

We store contacts within a database called Raiser’s Edge, which is provided by supplier Blackbaud and hosted in the US. Blackbaud stores its data in the US and complies with both the EU-U.S. Privacy Shield Framework and the Swiss – U.S. Privacy Shield Framework. Occasionally we carry out an address data-cleaning service which is provided via Blackbaud (called Mailwise), which ensures that data you have provided us with is up to date and that we are not using valuable resources where the addressee may have moved, for example.

Blackbaud use a third party company called CCR (which developed the Mailwise platform) to perform an address audit and clean-up. Blackbaud works in close partnership with CCR to ensure data security. Find out more about CCR’s secure data-handling in its Data Security Policy.

Where you have indicated you would like to hear from us by post, we use a company called Asendia to contact you. Asendia also sends Connect (our tri-annual publication) to our postal subscribers. Asendia uses a file transfer protocol called Sharefile which is provided by Citrix. Citrix complies with both the EU-U.S. Privacy Shield Framework and the Swiss – U.S. Privacy Shield Framework. ShareFile do not sell or otherwise disclose personal information received via their portal, except in limited circumstances. ShareFile’s Privacy Policy sets these circumstances out in more detail.

To learn more about the Privacy Shield Framework, visit the U.S. Department of Commerce’s Privacy Shield List.

Our database is kept up-to-date with your marketing preferences. You can change your email marketing preferences at any time by emailing info@sarcoma.org.uk or by writing to us at:

Freepost RTAA-JJEE-XAUG
Sarcoma UK
49-51 East Road
London
N1 6AH


E-news
If you subscribe to our Sarcoma UK E-news list, you will automatically receive emails with relevant news every six weeks.

We use Online Express (which is within the Raiser’s Edge database provided by our supplier Blackbaud) to manage our email marketing. Blackbaud stores its data in the US although it complies with the EU-U.S. Privacy Shield Framework and the Swiss – U.S. Privacy Shield Framework. Blackbaud will not sell data to third parties. Email processing is carried out on Blackbaud’s secure servers only.

Please see Blackbaud’s Privacy Policy to learn more about how your data is protected.

Our database is kept up-to-date with your marketing preferences. You can change your email marketing preferences at any time, by clicking ‘unsubscribe’ on any of our emails or by contacting info@sarcoma.org.uk.


Connect magazine
Connect is our free publication which contains the latest developments from the sarcoma community. If you subscribe to Connect you will receive three editions per year at the postal address you have provided.

We use a company called Asendia to post editions of the publication to our Connect postal subscribers. Asendia uses a file transfer protocol called Sharefile which is provided by Citrix. Citrix complies with both the EU-U.S. Privacy Shield Framework and the Swiss – U.S. Privacy Shield Framework. ShareFile do not sell or otherwise disclose personal information received via their portal, except in limited circumstances. ShareFile’s Privacy Policy sets these circumstances out in more detail.

To learn more about the Privacy Shield Framework, visit the U.S. Department of Commerce’s Privacy Shield List.

Our database is kept up-to-date with your marketing preferences. You can change your postal marketing preferences at any time, by emailing info@sarcoma.org.uk, or by writing to us at:

Freepost RTAA-JJEE-XAUG
Sarcoma UK
49-51 East Road
London
N1 6AH

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Facebook users
You may come across Sarcoma UK on Facebook through your own networks, or you may be presented with an ad from us. We target ads at audiences that look like they have an interest in sarcoma. We do this to raise sarcoma awareness inform, educate and engage with new potential supporters. 

Facebook is a hugely valuable tool for us and for the community that we serve, which is why we use the platform. Facebook however is a commercial company. We want to remind our users that information that is shared on timelines, on our page or in private messages may be used or sold by Facebook for commercial purposes.

Sarcoma UK also receives donations via Facebook’s Charitable Giving Tools. More information on the types of information we collect, and how we use and store donation information can be found within our Donors and Fundraisers section above.

For more information, read Facebook’s Privacy Policy.
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Twitter, Instagram and YouTube users
Sarcoma UK uses publicly available information from social media platforms (such as Twitter/Instagram/YouTube handles, URLs mentioned in tweets, direct messages, posts and uploads.

We do this to target tweets promoting Sarcoma UK and its work to social media users who have indicated an interest in topics relevant to our charitable activities. This data is collected manually and through third-party analytics platforms that search for links and references to published research on Twitter.

We use these platforms to raise sarcoma awareness, inform, educate and engage with new potential supporters, as well as gathering data from information that you share with us via your posts and direct messages. We may also signpost you to our Support Line if we feel this may be of benefit to you.

If you retweet/repost any of our content, your visit on our website will be announced to third parties and assigned to your Twitter/Instagram/YouTube account. For more detail about how these three social media platforms collect and handle your personal data as well as your rights and options for protecting your personal information, read:

Twitter’s Privacy Policy
Instagram’s Privacy Policy
YouTube’s Privacy Policy

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Third Party Platform Users
Some third-party organisations collect data on our behalf, and share it with us, in accordance with their policies and procedures for data protection compliance. Whenever you give your data to any organisation, you should always make yourself aware of their data protection and privacy policies.

Here are some examples of organisations we currently receive information from:

  • Online Giving Providers:  JustGiving, Virgin Money Giving, Facebook, Paypal Giving Fund, MuchLoved, Memory Giving and Give As You Live
  • Events Companies: Action Challenge; Charity Challenge; Classic Tours; Discover Adventure; EventBrite; RealBuzz; Skyline; Tough Mudder
  • Payroll Giving Agencies: Payroll Giving, Charities Trust, CAF, Benevity and Stewardship
  • Data Management Services: Fundraising Preference Service and Mailwise (address data cleansing provided by CCR)

More information on the types of information we collect, and how we use and store donation/fundraising/contact information can be found within our Donors and fundraisers section above.
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Website visitors
We use Google Analytics (GA) to track use of our website. We have GA code installed on our site which creates one or more text files on your computer (called a “cookie”). Please see our Cookie Policy for more detail. The cookies contain an ID number which is used to uniquely identify your browser and track each site you visit that has GA enabled.

We use this data to determine the number of people using our site and to better understand how they find and use our web pages. With this information we can continually improve the information that we provide on our site and the processes for actions such as contacting us and donating. We can also use it to increase the number of new people finding our site. We do not sell any information about your web-browsing activity.

GA stores the following data:

  • time of visit, pages visited, and time spent on each page of the webpages
  • number of interactions with site-specific widgets
  • referring site details (such as the URL a user came through to arrive at this site)
  • type of web browser
  • type of operating system (OS)
  • Flash version, JavaScript support, screen resolution, and screen colour processing ability
  • network location and IP address
  • number of document downloads
  • number of clicks on links leading to external websites
  • errors when users fill out forms
  • number of clicks on videos
  • scroll depth

GA also collects information about you from its Doubleclick tracking and profiling service, from ad-supported apps on your Android or iOS device, from your YouTube and Gmail activity and from your Google account. This data is put together and used to make inferences about your age, gender, interests, hobbies, shopping habits and living circumstances.  

If you already have GA cookies, they will be updated with the latest information about your visit to the site.

As Sarcoma UK cannot access any personal data about you ourselves, we are not the Data Controller for your Google Analytics or Doubleclick profile data. You would need to contact Google directly for this information.

You have the right to object to this tracking and you can take the following actions:

If you would like more detail about the methods used however, please get in touch at info@sarcoma.org.uk.
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Researchers and Sarcoma UK research grant applicants
We monitor the outputs and impacts of our research grant holders and the projects we have funded. We use a research impact assessment platform called Researchfish to do this.

Researchfish will only process your data in accordance with its Privacy Policy and in accordance with the General Data Protection Regulations.

We also store data on a database called Raiser’s Edge, which is provided by supplier Blackbaud and hosted in the US. Blackbaud stores its data in the US and complies with both the EU-U.S. Privacy Shield Framework and the Swiss – U.S. Privacy Shield Framework. They share data with third parties. To learn more about the Privacy Shield Framework, visit the U.S. Department of Commerce’s Privacy Shield List.

We will only contact you regarding your application, however, if you wish to hear about future funding opportunities, please let us know by emailing research@sarcoma.org.uk.

You can change your contact preferences at any time by emailing info@sarcoma.org.uk or by writing to us at:

Freepost RTAA-JJEE-XAUG
Sarcoma UK
49-51 East Road
London
N1 6AH

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Employees and job applicants
If you apply to work for Sarcoma UK we will only use the information you give us to process your application. If we want to disclose information to someone outside Sarcoma UK- for example, if we need a reference, or need to get a ‘disclosure’ from the Criminal Records Bureau - we will make sure we tell you beforehand, unless we are required to disclose this information by law. 

All information provided by you via our Equal Opportunities Questionnaire will be treated in confidence and will not be seen by staff directly involved in the interview process and appointment. The questionnaire will be detached from your job application form, stored separately and used only for monitoring purposes.

If you are unsuccessful in your job application, we will hold your personal information for 12 months after we’ve finished recruiting the post you applied for. After this date we will destroy or delete your information.

If you begin employment with us, we will put together a personnel file about your employment which is stored in secure electronic and paper-based formats.  Once you stop working for us, we will keep personnel information according to our record retention guidelines.

You can contact us at info@sarcoma.org.uk to find out more about this.

We treat all forms of personnel information confidentially, and the human resources department will only use it for matters that apply directly to your employment. 

We store electronic personnel information in Dropbox for Business. Dropbox complies with the EU-US and Swiss-US Privacy Shield Frameworks as set forth by the US Department of Commerce regarding the collection, use and retention of personal information transferred from the European Union, the European Economic Area and Switzerland to the United States. You can find Dropbox's Privacy Shield certification here. You can also find out more about Privacy Shield at https://www.privacyshield.gov.
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Survey responders
If you take part in a survey run by Sarcoma UK you will use an online service called SurveyMonkey which holds data in the EU, and is signed up to the EU-US Privacy Shield and Swiss-U.S. Privacy Shield.  SurveyMonkey may share information with third parties. For more information, read SurveyMonkey’s Privacy Policy.

If you prefer to submit responses to these surveys in another format, please contact info@sarcoma.org.uk.

We will only re-contact you following a survey if you have given us your consent.
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Event attendees
When you attend a Sarcoma UK event, we will need your name, email address and in some cases your payment information. We will use this information solely for the purpose of administering the event - once the event is over, we will keep attendance details according to our record retention guidelines. We use Eventbrite to manage event registrations. They may contact you about other events that may be of interest to you, but only if you opt in when you register with them. Read Eventbrite's Privacy Policy. This data may continue to be processed by those platform providers after the event has ended.

If you are a speaker at a Sarcoma UK event, we will publically promote your involvement via Twitter, LinkedIn and emails to our supporters. If you do not wish us to do this, then tell us by email at events@sarcoma.org.uk.
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