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Our commitment to you is that we will respect any personal data you share with us, or that we get from other organisations, and keep it safe. We aim to be clear when we collect your data and not do anything that you would not reasonably expect. We only ask for information that will inform our engagement with you personally and provide vital statistical data to underpin research and campaigning for better support for those living gluten free. There is no national register of people with coeliac disease so researchers come to us as we have the largest pool of people that can potentially help. Your participation in research could be essential in understanding more about the disease, developing treatments and finding a cure. Having the largest database of people suffering with coeliac disease and/or living gluten free gives us a powerful voice when lobbying the NHS on healthcare, the government on food policy and commercial partners on providing gluten free alternatives.
The data we collect
We collect some or all of the following information from you, or via third parties where you have consented to them sharing the data with us or from publicly available information.
Name, address, email, date of birth, health information, behavioural data from voluntary surveys and bank or card information where you buy our services and products. When on our website, we will use your IP address, cookies and services like Google Analytics and other statistical services to record your activity on our website to help improve the site and services to you.
From third parties
Where you have given consent, third parties will share data with us, such as fundraising activities from Just Giving, Virgin Money Giving, and similar sites or social media sites if you’ve consented to share data via your settings.
To help us profile our supporters so that we may target our resources most effectively, we may use public data such as held on Companies House, Office of National Statistics and other government sites containing socio-economic data for postcode areas.
We do not actively seek to populate telephone numbers and dates of birth that you have not given to us but we may ask you directly. However, this and other information may be provided to us through other sources that you have consented to be made publicly available.
If we retain any information not provided by you, we will record the source it originates from and whether it was publicly accessible.
What we use it for:
- Provide you with the member services you have subscribed to, products you have purchased or information you have requested.
- Communicate with you regarding any opportunities to support Coeliac UK including activities you have volunteered for or events you have signed up to.
- Administer your financial transactions with us including any fees, donations and processing any related gift aid.
- To keep a record of our relationship with you and to help us better inform our services to you in the future.
- Your communication preferences and where available, information on support that is local to you.
- To support the research community for coeliac disease by providing anonymised group data, or personal data only where we have your consent to do so should you wish to participate in any studies.
- To send you third party advertising where we believe the products will support living gluten free and / or related health conditions, we will not provide your personal data to third parties for them to market to you directly.
- If you engage with us via social media, we may in specific circumstances such as competition entry, pass your data to a third party but we will inform you of this before you submit your data so you can choose not to participate.
- In the event you enter your details on one of our online forms but don’t complete the submission, we may contact you to see if we can help with any problems you may be experiencing with our forms or website.
- Profiling our supporters by geographic, demographic and other information from the sources above (see The Data We Collect section) allows us to provide relevant and timely communications and a more tailored service to you. Profiling allows us to focus our resources, maximising the effectiveness of the financial support we receive and allowing us to make appropriate requests for additional support from those who may be able and willing to contribute more.
- If you join on behalf of a child under the age of 16, all our communications and services will be directed to you as the parent/carer to share with your child. We will never contact your child directly until they are over 16.
How we keep your data secure and who processes your data
The charity is the data controller and will perform the processes above with the support of trusted partners and suppliers, who will be held to the same standards of compliance as we are ourselves. We ensure they store the data securely and are contractually obliged to adhere to all the data regulations required by law.
We currently use third party suppliers to collect and/or process your data on our behalf to deliver postal mailings, make telephone calls to our supporters, send emails, process payments, operate our website and apps and analyse supporter trends. We only provide them with the data needed to deliver the specific service.
We continually monitor our trusted partners and suppliers to ensure they are adhering to the required standards.
We may need to disclose your data if required to the police, regulatory bodies or legal advisors. We will only ever share your personal data in other circumstances if we have your explicit and informed consent.
Where you use a third party to provide data to us, for example, Just Giving, they will have their own data protection and privacy policies and we recommend you are aware of these before signing up.
Our communications with you
There are many ways for you to engage with us. The communications you receive from us will be tailored to the nature of that engagement(s).
By joining Coeliac UK as a member, depending on the option chosen, you will receive some or all of the following essential communications and services containing information on living gluten free and related health conditions and on the campaigning and fundraising activities of the charity should you wish to join in at any point. A full list of all member services is available here.
- Food and Drink Guide (once a year) via post (also available via website and app)
- Crossed Grain Magazine (three times a year) via post (also available via website)
- E-newsletters via email or website
- Products and offers emails via email or website
- Keeping In Touch emails
- Membership renewal communications by email
- Local Groups – communications from your local support group where available
If you wish, you may opt out of any of these key services at any time by logging onto your account on our website or contacting our Helpline on 0333 332 2033.
We may also contact you by post, in addition to the above, with relevant and timely communications on the work the charity is doing, to give you the opportunity to help us campaign and fundraise for better support for those living gluten free or simply be kept informed of changes in policy and healthcare that may affect you. We believe that by engaging with the charity, you would reasonably expect to be kept informed when opportunities arise, but you may opt out if you don’t feel they are relevant for you at any time.
We will not send these communications by electronic means (including email, fax, telephone) unless you specifically give us consent to do so.
If we do not hear from you, we will not contact you once two years has elapsed since your last response to us unless you update your communication preferences by going online or contacting the helpline. We will only contact you after two years in the event you have made a pledge over the longer term or if there is another legitimate reason for doing so. We will retain your data beyond two years to meet any legal and financial requirements and in the event that you wish to reconnect with us in the future, unless you ask us to remove it, but as outlined above, we will not contact you after two years. Retaining your data also allows us to support 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.
If you would like us to remove your data (except that which we must retain for legal and financial reasons), please let us know via the helpline or online and we will remove it.
Your data and your rights
You have a right to ask for a copy of the information we hold about you, although we may need to charge an administration fee in certain circumstances. To do so please send a description of what information you would like a copy of, along with proof of your identity to Membership, Coeliac UK, 3rd Floor Apollo Centre, Desborough Road, High Wycombe, Bucks, HP11 2QW. We will supply the information as requested within one month of receipt or advise you if we are unable to comply for any reason. If you find discrepancies in the information we provide, please advise us by calling the Helpline on 0333 332 2033 so we can correct them.
You have a right to ask us to restrict or stop processing your personal data, and if it’s not necessary for the purpose you provided it to us for (eg administering your membership or processing your donation) we will do so. Contact us on 0333 332 2033 if you have any concerns. At your request, we will erase any data we hold unless it is required for legal or financial reasons if you no longer wish for us to hold or process your data.
If you have any questions please contact us on 0333 332 2033 for further information on data protection go to: https://ico.org.uk/for-the-public/