Your data is in safe hands with Crohn’s & Colitis UK. We are committed to looking after your personal data (this means any information that could identify you) and safeguarding your privacy.

The purpose of this policy is to give you clear and easy to understand information about how we collect and process your personal data and how we comply with legal requirements. We have provided a number of examples of how this policy applies, but please note that this is not a complete list.

Who we are

We are Crohn’s & Colitis UK, the UK’s leading charity for Crohn’s Disease and Ulcerative Colitis.

Crohn’s & Colitis UK

1 Bishops Square (Helios Court)

Hatfield Business Park



AL10 9NE

Our Data Protection Compliance Lead is Andrew Adie, Director of Finance and Corporate Services.

Our Data Protection Officer is Sarina Jesudason, Head of Operations.

If you have any queries about this policy or have a complaint, please email

How we collect information about you

Information you give us: For example, when you call the helpline, register for an event, sign up as a member, complete the IBD Survey

Information we get when you use our website: For example, cookies (please see the section ‘What website information do we use?’ for more information)

Information from our trusted third parties: For example, ‘JustGiving’ (a site that you can use to create a fundraising page to raise money for us), ‘Engaging Networks’ (a campaigning platform we use to send e-actions to politicians). These organisations will have their own privacy policies, so please do check with them before providing your personal data to them

Information we receive indirectly: For example, the emergency contact of an employee when they start working with us, information about a legator when we administrate legacies

Information available publicly: For example, information available from Companies House or sites such as LinkedIn

What personal information do we process?

We only process personal information that you give us (see above). We also only process the information that we need to. For example, we will only capture your bank details if you give them to us for the purpose of setting up a Direct Debit.

  • Contact details so that we can provide you with the right support and best service e.g. name, address
  • Financial information: We need your bank details to process Direct Debits, but we do not store credit or debit card information. This will be requested when making donations/paying for a membership through the website, but we will not retain these details.
  • Information about your computer/mobile device
  • Your health diagnosis
  • Sensitive personal information: see more below
  • Any other information you provide us

Sensitive Data

We sometimes process data that is legally referred to as sensitive data, for example:

  • Whether you or someone you are related to or care for, has a diagnosis of Crohn’s Disease or Colitis.
  • Ethnicity
  • Sexuality
  • Gender

We only ask for this information when needed for the following purposes:

  • To provide someone with Crohn’s or Colitis the information most relevant to their diagnosis
  • To help us understand how well we currently engage and support diverse groups of people affected by Crohn’s and Colitis
  • To take positive action to meet the needs of different groups, ensuring they are well represented, and to enable wider participation.
  • To enable us to monitor and evaluate progress with our work to improve equality, diversion and inclusion across all areas of the charity.

What website information do we process?

Google Analytics is a web analytics service that tracks and reports on website traffic. We use analytics services to help us understand what information people find useful on our website. This helps us improve our information and services. Google's tracking is anonymous so there is no way of working out the identities of who has visited our website.

Our websites run on Content Management Systems (CMS) which use cookies to function. Cookies are small parcels of information routinely used by websites, such as an option you’ve selected or a page you’ve visited. Most cookies expire as soon as your session expires, unless a user has self-selected options and book-marked pages within our website. Cookies do not collect any personal identifying information.

Most modern browsers allow you to manage cookies saved on your computer. Find out more about managing cookies on your browser.

How do we use your information?

  • To provide you with information and services. For example, we use your name, address and health information to send you relevant information as requested
  • To let you know about our work and how you can get involved in supporting the Crohn’s and Colitis community.
  • To analyse and improve services and make sure we are reaching everyone
  • To make our fundraising and marketing more relevant to you
  • To improve the work that we do via feedback, complaints
  • To process your donations and memberships
  • To process applications for funding
  • To monitor website use
  • To keep in touch with you and assess your eligibility for working and volunteering with us
  • To showcase our activities through your stories
  • To build a profile of our supporters and potential supporters. For example, we will use publicly available information combined with information you have provided us to develop a better understanding of our supporters.

Communicating with you

We want to keep you updated with what we are doing, and how you can get involved. We will keep in touch with you the way you have chosen under the follow legal bases for processing:

  • Legitimate interest: we will contact you where we believe there is a legitimate interest. We will establish that it is in your interest for us to be in touch, for example, if you are a current member, we may contact you about how your membership is helping others.
  • Consent: where we have gained explicit consent, for example if you have signed up to an electronic newsletter
  • Legal Obligation: there are a small number of times when we will have to contact you due to a Legal Obligation, for example, to confirm that you have made a Gift Aid declaration to us over the phone.

At any time, you can change how you hear from us (phone, email, mail and text messages/SMS) or choose not to be contacted by one of these methods or to not be contacted by us at all.

If you ask us to stop sending you marketing materials, we will keep a record of your contact details and appropriate information to enable us to comply with your request.

Your rights

You always have the right to:

  • Access the information we hold about you. We will provide you with written copies of this information.
  • Change the information we hold about you. We will update your personal details, such as your name, address, email address.
  • Remove the information we hold about you. We will delete from across our systems and files your personal information.
  • You will not be charged for any of the above and we will respond to your request within one calendar month.

To make a request, please email, call us on 01727 617457 or write to the Supporter Engagement team at Crohn’s & Colitis UK, 1 Bishops Square (Helios Court), Hatfield Business Park, Hatfield, Hertfordshire AL10 9NE.

Children, young people and adults at risk data

Children and adults at risk have the same rights as any adult over their personal data. At Crohn’s & Colitis UK, we define a child as anyone who has not yet reached their 18th birthday. We define an adult at risk as a person over the age of 18 years and:

  • has needs for care and support, and;
  • is experiencing, or is at risk of, abuse and neglect and;
  • as a result of those care needs, is unable to protect themselves from either the risk of, or the experience of abuse or neglect

We do not share information about children or adults at risk with anyone without consent unless the law and our policies allow us to do so, which overrides the need for consent to be sought. Our Confidentiality Statement outlines when we will need to do so, with examples from our Helplines.

For our parent and child memberships, all communication will be with the parent/guardian and we keep the following information about the child: Name, Date of Birth, Crohn’s or Colitis diagnosis, address. This information can be removed by request at any time. We will not contact your child directly.

We use the words and images of young people and children to demonstrate and promote our work. We request written consent from the guardian/parent for their data to be used in this way. As above, this can be revoked at any time.

For our Alex Demain Young Fundraiser of the Year award, we request written consent from the guardian/parent if the nominee is under 18 years old. We ensure the guardians/parents receive a copy of all communications between us and the young person.

Keeping your personal information safe and up to date

We store your data securely and in line with our Confidentiality and Data Protection policies.

We have security measures in place to protect your personal information. This includes encryption on our website, a closed network and a secure contacts database. We carry out regular security reviews and respond quickly to any breaches that could compromise your data.

Payment details (such as credit or debit cards) that we receive to make donations or pay for membership etc are passed to our secure payment processing providers who meet the Payment Card Industry (PCI) Security Standards. We do not store your card details.

If your personal information changes, please let us know. We try to keep our information about you up to date, for example by using the Post Office’s National Change of Address database.

We keep your data for as long as is necessary for us to provide you with the support, service or information you need. Some financial information has a legal requirement – for example, we need to keep Gift Aid details (including your name and address) for six years.

If we have not heard from you within 3 years, we will no longer proactively contact you. if you wish to continue getting communications from us please let us know at

Who we share your data with

The following are examples of the trusted suppliers we work with. We work hard to ensure that their policies and values align with our own. We securely transfer data to them, mainly encrypted over Secure FTP.

  • Mailing houses
  • Fulfilment houses
  • Event organisers
  • Analysis companies, usually anonymised

We only pass the information on that is vital for the intended purpose. For example, we will not share your phone number with a mailing house to send you our printed Connect magazine.


Our volunteers agree to our Data Protection policies and those who view personal data on our internal database sign a confidentiality agreement. For safeguarding purposes, a lead volunteer will keep the following information about attendees who are under 18 at our in-person events: full name, address, age. This information is destroyed securely after the event.

We have separate social media policy for volunteers who run local network pages. Volunteers manage a local network email inbox and all enquiries about the local network activity are performed through this channel.

Social Media

Our supporters are important to us and by reaching more people we can increase our impact. We sometimes create ‘lookalike’ audiences on social media platforms to match interests, behaviour and demographics of Crohn’s & Colitis UK supporters to others who may benefit from our information, support and engaging with the charity. We may also participate in social media platforms’ audience preference services which remember supporters who have responded in the past to Crohn’s & Colitis UK fundraising and marketing requests. Using platforms in this way is an important way in which we can reach more people who are likely to be interested in our work. 

At any time, you can change your settings via the social media platform: 

If a child, young person or adult at risk has shared their story via their own personal social media page e.g. Instagram, we may reshare using judgement, ensuring no personal details or identifying information is included, such as full name, home address or name of school. 


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Helpline service


We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.

Our helpline team can help by:

  • Providing information about Crohn’s and Colitis.

  • Listening and talking through your situation.

  • Helping you to find support from others in the Crohn’s and Colitis community.

  • Signposting you to specialist organisations.

Please be aware we’re not medically or legally trained. We cannot provide detailed financial or benefits advice or specialist emotional support.

Please contact us via telephone, email or LiveChat - 9am to 5pm, Monday to Friday (except English bank holidays).

Live chat

If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.

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