Privacy
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
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 want 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 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 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. Your participation by receiving our marketing communications is also essential in showing both the need for and support of new initiatives around gluten free food provision and our community’s commitment to improve the lives of everyone who needs to live gluten free.
Please read the following information to understand how we collect your data, the purpose of collecting it, and how we process it. We will notify you of any changes to our privacy policy via our website, member communications and our supporter newsletters.
The data we collect
We collect some or all of the following information from you, or via third parties (only when you have consented to them sharing the data with us), or from publicly available information.
From you
Name, address, phone number, email, date of birth, ethnicity, health and dietary information and facial photographs if you choose to provide one for your online account or case study. We collect behavioural data from voluntary surveys and other responses to our communications. Bank or card information is collected when 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
Personal data may be supplied to us by individuals applying for membership on your behalf, such as a parent, carer or other household occupant or employers signing up an employee for a training course. Unless you are under 16 years of age, we will inform you when this happens when we contact you for service purposes.
Where you have given consent to third party organisations they 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.
Public information
We may collect and analyse personal information from public sources to create a summary of your interests and preferences so we can contact you in the most appropriate way, with the most relevant information. 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.
Individuals have certain rights over their personal data and data controllers are responsible for fulfilling these rights. Where we decide how and why personal data is processed, we are a data controller and have provided further information about the rights that individuals have and how to exercise them below.
Right of Access
You have a right of access to personal data held by us as a data controller. This right may be exercised by emailing us at dpo@coeliac.org.uk, or write to us at:
Coeliac UK, 3rd Floor Apollo Centre, Desborough Road, High Wycombe, Bucks, HP11 2QW
You may be asked to provide the following details:
- The personal information you want to access
- Where it is likely to be held
- The date range of the information you wish to access
We will need you to confirm your identity. If we hold personal information about you, we will give you a copy of the information in an understandable format together with an explanation of why we hold and use it. We will aim to respond to any requests for information promptly, and in any event within the legally required time limits (30 days). This timeframe may be extended by up to two months if your request is particularly complex.
Right to stop processing
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 or business contract) we will do so. Contact us on 0333 332 2033 if you have any concerns. You also have the right to ask the Coeliac UK to stop using your personal data for direct marketing purposes. To stop receiving an email from Coeliac UK, please click on the unsubscribe link in the relevant email received from us or you can manage your marketing contact preferences using ‘My Account’ on the website or contact us using the details below.
Amendment of personal data
We want you to remain in control of your personal data. You can update or amend your personal data via ‘My Account’.
When practically possible, once we are informed that any personal data processed by us is no longer accurate, we will make corrections based on your updated information.
Alternatively, you may:
Call us: 0333 332 2033
Write to: Coeliac UK, 3rd Floor Apollo Centre, Desborough Road, High Wycombe, Bucks, HP11 2QW
The verification, update or amendment of your personal data will take place within 30 days of receipt of your request.
Other data subject rights
This privacy policy is intended to provide information about what personal data we collect about you and how it is used. As well as rights of access and amendment referred to above, individuals may have other rights in relation to the personal data we hold, such as a right to erasure/deletion (‘right to be forgotten’), to restrict or object to our processing of personal data and the right to data portability. There may be other legal reasons why we need to process your personal data, but please tell us if you don’t think we should be using it. If you wish to exercise any of these rights, please send an email to dpo@coeliac.org.uk, or write to us at the address above.