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Coeliac UK and your data

On 25 May 2018, the data protection law is changing. The General Data Protection Regulations (GDPR) are designed to give you more control on how organisations collect, use and protect your data. For full information on GDPR, visit www.eugdpr.org

This means we want you to understand that we will only process your data where we have a legitimate interest to do so, for example, where you have engaged with us as a member or supporter, or in a professional or business capacity. If we ask you for sensitive data, such as health information to help us support you more effectively, we will ask for your consent.

A few reasons why your data is so important to us

Your data is vital in helping us improve the lives of people with coeliac disease and those who live gluten free. With your data, we can:

  • Hold the largest database of people with coeliac disease in the UK, a vital resource to those researching the condition and looking for solutions.
  • Provide you with the essential services you need to help you live well, gluten free - information on getting diagnosed, how to follow a gluten free diet and how to access gluten free food safely away from home.
  • Invite you to help us with our campaigns to improve diagnosis rates, post diagnosis healthcare, to improve access to gluten free food both in the home and on the go.
  • Tempt you with information and offers on gluten free products from our close work with gluten free providers across the retail and catering sectors.
  • Contact you with our latest appeals for support, to help keep Coeliac UK working to support and raise awareness of the gluten free community.
  • Offer you the chance to win prizes and cash in our raffles, lotteries or other games and competitions.

A new privacy policy

With the new regulations, we need to explain how we will collect, use and protect the data you provide to us so we’ve written a new privacy policy so you can understand how we will use your data when you share it with us as a member, supporter, someone seeking diagnosis or engaging with us in a professional or business capacity. We will only process your data in relation to the reason you have provided it to us – to provide member services, diagnosis guidance, professional training or business services.

View the new privacy policy.

We’ll ask you if we can use your health data

Currently, we use your health and ethnicity data you’ve provided on the basis of legitimate interest for health and social care purposes, for you individually and for the community as a whole. We know this  information is sensitive, so we want to make sure you can also choose to give your consent to use it, or withdraw it at any time. You may give us your health and ethnicity data when you join the charity or when you sign up to take our diagnosis assessment, Is it coeliac disease. This information is used to make sure we provide the right information to you and also supports research into coeliac disease. We are the only organisation in the UK that has a register of people with coeliac disease, which can help researchers find better solutions to managing, and eventually, curing coeliac disease by using your data anonymously. 

Our members, supporters and professional clients

If you join as a new member or supporter, or remain with us over time, as part of our service to you, we will use your data to provide you with different types of benefits and communications through different channels to help you live well gluten free as per our member benefits list. We are working to give you functionality to go online and tailor those preferences yourself.
For commercial professionals and health care professionals, we will offer services appropriate to your engagement with us

Give us your go ahead to contact you about our other activities

Not all of our activities are part of the member benefits or other services you have signed up, though you might see them in our publications or on our website, so sometimes we would like to contact you personally for your help with the work we do.

Such as the chance to get involved with important research into coeliac disease and the effects of gluten; about community events such as food fairs; invites to play in our raffles, lottery or other games; with opportunities to give to support the work of Coeliac UK, and ways you can help us campaign to improve the standards of living gluten free.

For commercial professionals and health care professionals, we would like to tell you about other commercial services or CPD opportunities to benefit your business or practice appropriate to your company or role.

Choose how to hear about our other activities

You can hear from us how you want to. We hope you’ll want to hear from us by post, if not, you can choose email or phone. You could choose all of these options, or just one or two of them – it’s up to you, we’ll contact you on the basis of your choice and the most effective way.

And soon, we’ll be able to let you be more specific and tell us which of these activities you want to hear about… watch this space.

  • Research – we support vital research into coeliac disease and the effects of gluten, find out the latest and how you can participate.
  • Giving – your donations enable us to continue our research, support and campaigning to improve the lives of those needing to live without gluten.
  • Campaigns – find out about how you can support our campaigning work to improve access to gluten free food, increase diagnosis and other key issues.
  • Lotteries – each week you can win up to £10,000 per draw with proceeds going towards the charity’s support services, research and campaigning. 
  • Community and events – hear about challenge events, gluten free food fairs, healthcare changes and other things happening around you.
  • Raffle and gaming - find out how you can win great prizes in our raffles and support the charity too.

Your support is vital to the work we do, so being able to keep you informed of new developments and opportunities ensures that our gluten free community stays strong and connected…so please give us your go ahead.

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