Privacy Policy


  1. Coverage of this policy

Cardiac Risk in the Young (CRY) is committed to protecting your personal information, irrespective of your connection with the organisation. This policy explains how CRY collects and uses the personal information you provide to us, whether online, via phone, via email, in letters or in any other correspondence. In some of the ways that we interact with you, additional terms and conditions may also apply that set out further ways in which we will use your personal information. We ensure that we use your information in accordance with all applicable laws concerning data protection of personal information. This policy explains:

  • What information CRY may collect about you;
  • How we will use that information;
  • Your choices regarding the information you provide to us; and
  • How we use cookies to provide services to you or to improve your use of our websites.

As indicated later in this document, CRY does not, under any circumstances, sell, share, pass on or in any other way distribute personal details to other organisations, in order for them to send you information about their services or to ask you for donations. Also, CRY does not buy or in any way accept mailing lists from any other organisation.

If you have any queries about this policy please contact the Operations Director at CRY by emailing

By using our website or any of our services, or providing us with any personal data, you agree to your personal data being used and disclosed in the manner set out in this policy.

  1. Information collection

CRY may collect personal information about you when you enquire about our activities, register with us for our publications, engage with our social media or message boards, make a donation to us, register for an event or otherwise provide us with personal information.

There are occasions where we may also receive information about you from third parties. This will usually be when you have donated to CRY via an external site – e.g. JustGiving – or when you have signed up to participate in an event on behalf of CRY and registration for that event is run by another organisation – e.g. places for the London Marathon. This can include information such as your name, postal address, email address, phone number, credit / debit card details and whether you are a tax payer (so that we can claim Gift Aid).

We may also gather information about the use of our websites, such as which pages are most visited and which events or facilities are of most interest. We will use this information to improve our websites and to ensure we provide the best services for users. Wherever possible we use aggregated or anonymous information which does not identify individual visitors to our websites.

If you complete any online forms on CRY websites or register to use any restricted-access areas of CRY websites, then the following will also apply:

  • All CRY websites collect personal information when you complete an online form or register with us;
  • The forms you complete and / or websites you register with will collect information such as your name, email address and post code;
  • Once you register with a CRY website to gain access to restricted content / areas, you will not be anonymous to us when you subsequently sign in;
  • As part of the registration process and for continued use of CRY services, you agree that any registration information you give to CRY will always be accurate, correct and up to date;
  • We collect and retain information about your online transactions with us so that we can process your transactions and deal with future queries;
  • Through the use of cookies, we will receive information from your computer such as your IP address (the unique number that identifies your computer when you use the internet).

CRY does not usually collect ‘sensitive personal data’ about our supporters unless there is a clear reason for doing so, such as participation in a marathon or similar fundraising event. We may collect health information if you tell us about your experiences relating to young sudden cardiac death. However, we will make it clear to you when collecting this information as to what we are collecting and why.

  1. Where we store your information


CRY holds all data and personal information on secure computer servers that are physically located in the UK. CRY is considered to be the data controller for all personal information collected and stored.


  1. Keeping your records


CRY keeps records for as long as required in accordance with legal requirements and tax and accounting rules. Where your information is no longer required, we will ensure it is disposed of in a secure manner.

  1. Keeping your information up to date

The accuracy of your information is important to us. If you would like to update the details we hold about you or change your preferences for how we contact you, please contact CRY on 01737 363222 or email

Under the Data Protection Act 1998 you have a right to request a copy of the personal information we hold about you and to have any inaccuracies corrected. We require you to prove your identity with two pieces of approved identification. Please address requests to the Data Protection Officer at and we will respond within 30 days. Please provide as much information as possible about the nature of your contact with us, to help us locate your records.

  1. Using your information

By submitting your details, you enable us (and where applicable, any suppliers we may use) to raise funds for our ongoing campaign objectives; and to provide you with goods, information, activities, online content and any other services that CRY may provide.

CRY does not sell, share, pass on or in any other way distribute personal details to other organisations, in order for them to send you information about their services or to ask you for donations. CRY does not buy or in any way accept mailing lists from any other organisation. Also, CRY does not use agencies.

CRY may disclose your personal information to third parties if we are under a duty to comply with any legal obligation; or in order to enforce or apply our rights; or to protect CRY.

We may use your information for a number of purposes including the following:

  • To provide you with the services, products or information you have requested or which we feel may interest you where you have consented to being contacted;
  • To process donations we may receive from you;
  • To fundraise (note: CRY never directly asks for donations, but does provide various methods for doing so);
  • To create an account for you if you register with us;
  • To fulfil sales contracts you have entered into with us;
  • To invite you to participate in interactive features on our website when you choose to do so;
  • For administration purposes (for example, we may contact you regarding a donation you have made or the event you have registered for);
  • For internal record keeping, including the management of any feedback or complaints;
  • To invite you to participate in surveys or research (although this is voluntary);
  • To use IP addresses to identify your approximate location – to block disruptive website use, to record website traffic or to personalise the way our information is presented to you;
  • To analyse and improve the services offered on our sites to make it as user-friendly as possible;
  • Where it is required or authorised by law, we may assess your personal information for the purposes of credit risk reduction or fraud prevention.


  1. Your debit and credit card information

If you use your credit or debit card to donate to us, buy something or pay for a registration online or over the phone, we will ensure that this is done securely and in accordance with the Payment Card Industry Data Security Standard.

  1. Marketing and information

We may contact you for marketing purposes by email if you have agreed to be contacted in this manner and do not opt out of receiving further marketing information. We may also send you service communications via email – for example, where you place an order for goods or services on our website, or you have made a donation.

If you have provided us with your postal address or telephone number we may send you direct mail or telephone you about our work, unless you have told us that you would prefer not to receive such information.

It is your choice as to whether you want to receive information about our work and the ways you can get involved. If you do not want us to use your personal information in these ways, please tick the relevant box situated on the form on which we collected your data.

You may opt out of marketing emails at any time by clicking the ‘unsubscribe’ link found at the bottom of all such emails; and can opt out of receiving marketing texts by sending us an “opt out” text message. You can also change any of your marketing preferences at any time – including telling us that you don’t want us to contact you for marketing purposes by telephone, or send you direct marketing by post – by contacting CRY on 01737 363222 or

You can also subscribe to, or unsubscribe from, certain types of regular mailings, by using the contact form on the main CRY website:

We will not use your information for marketing purposes if you have indicated that you do not wish to be contacted for such purposes.

  1. Website terms & conditions

Access to and use of this site is provided by the charity Cardiac Risk in the Young (CRY) subject to the following terms and conditions. Your use of this site constitutes acceptance of these terms and conditions as of the date of your first use of the site.

This site and the information, names, images, pictures, logos and other content regarding or relating to CRY are provided “as is” without any representation or endorsement made and without warranty of any kind whether express or implied. In no event will CRY be liable for any damages including, without limitation, indirect or consequential damages, or any damages or loss of profits whatsoever arising from the use or in connection with such use or loss of use of the site, whether in contract or in negligence.

You agree to use this site only for lawful purposes and in a manner which does not infringe the rights or restrict, or inhibit the use and enjoyment of the site by any third party.

CRY cannot be held liable for the result of any action based on the information within this website.

CRY does not warrant that the functions contained in the material on this site will be uninterrupted or error free, that defects will be corrected, or that this site or the server that makes it available are free of viruses or bugs or represents the full functionality, accuracy and reliability of the materials.

CRY will review this policy at least annually, but CRY reserves the right to change this policy at any time by posting changes online. Your continued use of this site after changes are posted constitutes your acceptance of this agreement as modified.

These terms and conditions shall be governed and construed in accordance with the laws of England and Wales. Any disputes shall be subject to the exclusive jurisdiction of the Courts of England and Wales.

If there is any conflict between these terms and conditions and rules and / or specific terms of use appearing on this site relating to specific material then the latter shall prevail.

If these terms and conditions are not accepted in full, the use of this site must be terminated immediately.

We actively seek suggestions, ideas and input from visitors to the CRY website. If you have any comments please contact Nat Jenkins at


  1. Website copyright restrictions

The material on the CRY website is protected by copyright laws. Commercial use or publication of all or any item displayed is strictly prohibited without prior written authorisation from CRY. Nothing contained herein shall be construed as conferring any license by CRY to use any item displayed.

Documents on this site may be copied for personal, non-commercial use only on the condition that copyright and source indications are also copied, no modifications are made and the document is copied entirely. However, some documents and photos have been published on this site with the permission of the relevant copyright owners (who are not CRY). All rights are reserved on these documents and permission to copy them must be requested from the copyright owners (the sources are indicated within these documents/photographs).


  1. Cookies

All CRY websites use cookies to help our websites work well and to track information about how people are using them. By using this website you are agreeing to this privacy and cookies policy and you consent to our use of cookies in accordance with the terms of this policy.

Cookies are small pieces of data created and stored on your PC when you visit a website. They are required to keep the site working and provide the necessary services. The CRY website uses ‘session’ cookies to track where you are whilst you are browsing the site. These cookies do not contain any personal information about you and will be removed from your computer when you leave the site. We use this information to monitor website traffic data, which helps us to develop the website so that it provides a user-friendly browsing experience whilst also effectively conveying CRY’s key messages. We can tell how many people have visited specific pages but we cannot identify who these people are.

Additional types of cookies are also used when you interact with CRY in certain ways via links on this website:

  • Shopping cart cookies are used when you visit the CRY online shop and order items. These cookies are essential to perform the ‘purchasing’ actions that people request whenever they shop online (e.g. when you click on ‘Add to basket’)
  • Social media cookies are used by Facebook, Twitter and so on. Social networking websites need to know who you are in order to work properly.

Most web browsers (Internet Explorer, Firefox, etc) accept cookies automatically, but you can alter the settings of your browser to prevent this automatic acceptance. However, if you reject the use of cookies please note that your experience of the CRY website (and indeed, all websites) may be affected. If you would prefer not to use the CRY website to purchase merchandise or register for events then you may contact the CRY office on 01737 363222.

Information on how to turn off cookies can be found by searching online.

Any communication or material that you transmit to, or post on, any public area of this site including any data, questions, comments, suggestions or the like is, and will be treated as, non-confidential and non-proprietary information.


  1. Inappropriate website content


If you post or send any content that CRY believes to be inappropriate, offensive or in breach of any laws, such as defamatory content, CRY may use your personal information to inform relevant third parties such as your internet provider or law enforcement agencies.

  1. Medical information on CRY websites

The CRY website should not be used for the diagnosis or treatment of a heart abnormality. If you would like more information contact CRY or consult your own doctor.

The medical information contained in this website is provided for information only, even though it has been prepared by CRY’s team of cardiac physicians. It is not intended to replace a consultation with an appropriately qualified medical practitioner.

  1. External internet sites

This policy only applies to websites owned or operated by CRY. Links within CRY’s websites to other websites are not covered by this policy. CRY takes no responsibility for the content of external websites and you use those sites at your own risk.

If you use a link on CRY’s websites to the website of a third party you should refer to the privacy policy relating to that website to understand how your personal information is managed by that third party or how they use cookies.

The existence of a link from any organisation’s site to the CRY site does not imply that CRY endorses the activities or views of that organisation. Any references on CRY’s websites to third party goods or services do not constitute or imply endorsement by CRY unless expressly so stated.

  1. Users under 18

If you use this site for information about fundraising, campaigning or supporting the work of CRY, please ensure that you have the consent from a parent or guardian before giving us your personal information. CRY is committed to protecting the privacy of the young people who work with us.

CRY Privacy, Website and Cookies Policy, v2.0, 2015-09-22