The General Data Protection Regulation (GDPR) is a new law which came into effect in May 2018 that changes the way personal data is collected, used and kept.

We have to demonstrate how we meet these regulations, and must now specifically receive an ‘opt-in’ from you to make sure you want to hear from us.

One main change that will come into effect is that we now need to ask you if you still want to hear from us, and check how you want to hear from us.  We are asking if you want to receive emails or post from us, or both, according to your preference. You also have the option of opting-out of all communications from us.

If we don’t hear from you to confirm this we can no longer stay in touch with you, unless you have previously opted-in.

The new regulations have six main points telling us how we can collect, keep and use your data. The processing must be:

• Processed lawfully and clearly, the process must be transparent
• Collected for specific and legitimate purposes
• Relevant and limited to the purpose it was collected for
• Accurate and kept up-to-date
• Not kept for unnecessary lengths of time
• Processed and kept securely

Personal data refers to any information about you that means you can be directly or indirectly identified as an individual, e.g. your name, date of birth, address.

Previously when you gave us your contact information we sent you our free magazine and news via email. Now, to be able to continue to do this, we need your permission. Please tell us in what form you'd like us to contact you and we will. Remember, you can opt-out at any time.

We now need to prove that you want to hear from us – due to the new data protection regulation. If you’ve signed up before, or have been receiving our communications for a long time, we may not have a record of this, which is why we have to ask you if you wish to continue receiving communications from us.

Yes, you can choose how to hear from us, in whichever way you prefer.

By post we send our quarterly magazine My Life,  which is focused on updates about cardiomyopathy and treatments, the latest news, information about us and our work, and topical issues that may interest those affected by cardiomyopathy. It also includes information about fundraising for us and supporting us, but the focus is on our services and supporting you.

By email we send an electronic version of My Life each quarter. Each month we also send both fundraising and services updates. These are separate emails and you can choose to receive either fundraising or services emails, or neither – simply by opting out of one of our emails. Please note if you unsubscribe from our services emails you will no longer receive My Life by email.

All of your information is stored securely on Cardiomyopathy UK’s database. We never share your details with other charities or companies, and will only send what you want to receive.

We only share your data where necessary, to continue to provide you with the services you have requested. For example, if you subscribe to our magazine, we will pass your name and mailing address to the publishing house to send it to you. Your details are then securely destroyed after the magazine has been sent.

If you have registered with us to take part in an event, where necessary, we will pass on the relevant details such as your name, address, contact details and running time to the event organisers, so they can process your entry into the event.

We may need to disclose your details if required to the police, regulatory bodies or legal advisors or otherwise where required to do so by law.

We will only ever share your data in other circumstances if we have your explicit and informed consent.

Third parties

Where we share your data with third party organisations (such as a skydiving centre, or a running event) we do everything we can to ensure that your data is processed and stored securely by the third party.

If you don’t do anything we must assume you no longer wish to hear from us, unless we have a note of your previous opt-in.  Therefore we will stop sending you any communications.

If you do want to keep hearing from us you will need to either complete our online form, return an opt-in form to us in the post or call us on 01494 791224.

No – we don’t telephone people for appeals or communications; it is not how we operate as a charity. We only phone people on a one to one basis if they have a query or want to speak to us about fundraising or our support services.

Previously we had to comply with the government’s Data Protection Act of 1998, monitored by the Information Commissioner’s Office (ICO). This was replaced by the General Data Protection Regulation in May 2018, also governed by the ICO, which will be replaced by the Data Protection Bill (still in draft form) when we leave Europe.

Any company, business or organisation, including charities, that holds personal data about you, has to obtain your consent to remain in contact with you (since May 2018), therefore this is not just charities.

This rule applies to all companies and charities in the UK, so you need to opt into all of the causes you support. 

The new regulations apply to personal data for individuals – held by any company or organisation.

The new rules came into force on 25 May 2018, after which we aren’t allowed to contact you at all unless you’ve told us you want to hear from us.

The new GDPR law is a European law, but the government has already confirmed that Brexit will not affect the law. When we leave the EU GDPR will be replaced by the Data Protection Bill, which will largely follow GDPR.

Yes it is. The Fundraising Preference Service (FPS) is a new complaints service that allows the public to opt-out of any communications from specific charities, by contacting the FPS. The FPS will then tell the specified charity to remove that person from their mailing lists. The data protection rules mean that we have asked all of our supporters if they still wished to hear from us by communicating with them directly; and is a different set of regulations.

The GDPR are regulations governing the whole of the European Economic Area (EEA). Therefore any organisation processing your data in Europe must comply with these regulations.

No, any company or organisation that you have been in touch with previously that hold any personal data about you should have been in contact with you, to find out how you wanted to hear from them in the future.

We make a log of raffle ticket sales on our database for those who return them to us. We contact the raffle winners via the contact details provided on the ticket stubs or online sales, however we do not use this personal data for future marketing and it is destroyed 3 months after the raffle draw.