The Encephalitis Society is committed to keeping your information secure and managing it in accordance with our legal responsibilities under privacy and data protection laws where we operate.
This Privacy Policy provides information about how we process your personal information.
By visiting our website, you agree to your personal information being used and disclosed in the manner set out in this Policy.

The personal information that we collect

When you use as is the case with most websites, certain limited information (such as your browser type and IP address) will be collected by us automatically.
We will also collect and store certain personal and private information when you make a donation through, by telephone, by post or in person (for example, at a community event). To enable us to process donations we will collect basic payment information. If you are eligible for UK Gift Aid, we may also ask you to confirm your UK home address.

If you use our Support Service or become a member of our Society, we may collect sensitive information about you such as your illness, the after-effects, your age and a history of your contacts with us. If you would prefer not to have this information stored, please let us know.  This will not prevent you from using our services. Information about your condition, after-effects and the diary log of your contact with us helps us to monitor and tailor our services to specific needs of our audience and provide you with the best services. This sensitive information about you will NOT be shared with anyone or any organisation outside The Encephalitis Society unless required by law. We do not sell or rent your information to anyone.

How we use personal information

We use the personal information collected from users for a number of purposes:

  • administering donations made (and claiming Gift Aid, if applicable);
  • personalising the look and feel of (as well as our communications with users) to fit personal preferences which you have told us about or which we have inferred from your usage of our website or derived from market research;
  • providing users with fundraising related news stories, event information, and updates on campaigns or fundraising;
  • to help us prevent fraud associated with online payments; and
  • improving the service we offer – for example you may be asked to complete one of our online user satisfaction surveys.

We may contact you from time to time to ask you if you would be interested in sharing personal experiences you may have had in relation to encephalitis, or to provide comments on the work that we do. We would explain in further communications with you how that information would be used, and we treat all such accounts which our supporters share with sensitivity and care.
We will only use your information where we have obtained appropriate permissions from you (e.g. with tick boxes) and will only use the information in accordance with this Policy, or where it is required and authorised by law.

Prior to processing your personal data for any of the purposes stated in this privacy policy, we ensure that there is a legal basis for doing so under the conditions of the GDPR. Under normal circumstances, this legal basis will be your explicit consent to process your data. Whenever we request personal data from you, you will be provided with the means to give us explicit consent to process your data for the purposes outlined in this privacy policy. If this consent is not given, we will not process your data except where processing is otherwise permitted or required by a lawful basis under the GDPR. These lawful bases include:

(a) Consent: the individual has given clear consent for us to process their personal data for a specific purpose.

(b) Contract: the processing is necessary for a contract we have with the individual, or because they have asked us to take specific steps before entering into a contract.

(c) Legal obligation: the processing is necessary for us to comply with the law (not including contractual obligations).

(d) Vital interests: the processing is necessary to protect someone’s life.

(e) Public task: the processing is necessary for us to perform a task in the public interest or for our official functions, and the task or function has a clear basis in law.

(f) Legitimate interests: the processing is necessary for our legitimate interests or the legitimate interests of a third party unless there is a good reason to protect the individual’s personal data which overrides those legitimate interests.

If you do not wish to give your consent for us to process your personal data, but you would like to take advantage of the support services that we offer, then we will process your data under the legal basis of legitimate interest in order to provide those support services. We will use the personal data you have provided (such as a name and email address) in order to contact you in response to your requests for support services. Your personal data will only be used in ways you would reasonably expect and where the processing is absolutely necessary to provide you with requested support services. We will hold the personal data you provide us with on our secure database so that we may fulfil our support and customer service commitments, but your data will not then be processed except under the legal basis of legitimate interest. For example, you will not be the recipient of any unexpected communications or be included in any mailing lists to be kept up to date with our latest news, events or developments in encephalitis support.

Communications from us

Where you have indicated you would like to receive updates we may send marketing in the form of email alerts and bulletins to tell you about developments in the services available through our website, together with news stories and event information related to the charity.
Where you have indicated that you would like to receive direct marketing communications from us, we will use your personal preferences which you have told us about, which we have derived from Cookies (see our Cookies Policy) and/or which we have inferred from your service usage (see Analytics below) or market research.
You can also unsubscribe from receiving certain electronic messages by following the “unsubscribe” instructions included in our communication or at any time by contacting us on [email protected] or call +44 (0)1653 699599.
The accuracy of users’ personal information is determined by the accuracy of the information you supply to us. The Encephalitis Society is not responsible for errors or problems that arise as a result of inaccurate information provided by users. If you have opted to receive marketing information from us, we may contact you from time to time to ensure the information is up to date.

Providing information to others

We work closely with a number of trusted partners with whom we need to share personal information to help us operate this website and manage our on-going relationship with you. These include:

  • banks and payment providers – to authorise and complete payment transactions;
  • organisations within the payment card industry to help prevent online fraud;
  • law enforcement bodies in order to comply with any legal obligation or court order and, where we are otherwise requested to provide information, we may provide it but only in accordance with applicable privacy and data protection laws; and
  • HM Revenue & Customs, but only if we need to authorise claims for Gift Aid or other forms of tax efficient ways of giving.

We may also provide information to third party service providers who process information on our behalf to help run some of our internal business operations including email distribution, IT services and customer services (see Working with other service providers and our local voluntary committees).
We will only share information with such organisations where we have your permission to do so in accordance with this Policy, or where we believe it is necessary for a legitimate reason connected with the services we offer.
You agree that we may disclose or share your personal information with such partners in order that we may operate this website and manage our on-going relationship with you.

Working with other service providers

For operational reasons, we transfer personal information to service providers who help us manage our systems and processes (such as card payment providers), and to deliver our services to users.
Some of our service providers and group companies may be located in the UK, other countries in the European Economic Area or elsewhere in the world (for example our database provider in the United States). Different privacy laws may apply in these countries and you understand and unambiguously consent to the transfer of personal information to these countries and service providers.
We only make these arrangements or transfers where we are satisfied that adequate levels of protection are in place to protect any information held in that country or that the service provider acts at all times in compliance with applicable privacy laws. Where required under applicable laws we will take measures to ensure that personal information handled in other countries will receive at least the same level of protection as it is given in your home country.
In the event your personal information is transferred to a foreign jurisdiction, it may be subject to the laws of that jurisdiction and we may be required to disclose it to the courts, law enforcement or governmental authorities in those jurisdictions but we will only do so where required by applicable laws.

Keeping information secure

We invest appropriate resources to protect your personal information, from loss, misuse, unauthorised access, modification or disclosure. However, no internet-based site can be 100% secure and we cannot be held responsible for unauthorised or unintended access that is beyond our control.

Updating your preferences

Please notify us of any changes to your personal information which you have provided to us. You can do this by contacting us using the details below.

Keeping your records

We keep records for as long as required to operate the service in accordance with legal, tax and accounting requirements. Where your information is no longer required, we will ensure it is disposed of in a secure manner and, where required by applicable law we will notify you when such information has been disposed of.


We use analytics tools on our website to collect and store information regarding how you use the site, the pages you visit and time spent on each page. This information is used for statistical analysis and helps us to improve the website and whilst it is stated in our privacy policy, it has no impact upon you.
These tools may be provided by third-party service providers and may include the collection and tracking of certain data and information regarding the characteristics and activities of visitors to our website. We may disclose data, including personal information, to certain such third-party services providers in order to obtain such services.
One of these providers is Google Analytics and more information about the ways in which they collect and process your personal data can be found here:
If you use buttons on our website linked to social media or similar sites (for example “Like” and/or “Share” buttons), content from our website may be sent back to that other website and, depending on your privacy settings, may be privately or publically visible (for example to friends, followers or generally to anyone who has access to your profile page).
You may request further details on these other tools and third parties from us.


Our website uses cookies (which includes third party cookies to support social media, personalisation and analytics functionality).
Cookies are small computer files which are downloaded onto your device and collect information about the way in which you navigate and use our website and the internet. Cookies do not collect information which allows us to identify individual users. The information provided by cookies helps us to provide you with a more personal experience and allows us to make improvements to our services over time. You may delete and block all cookies or decide to just block certain types of Cookie via your browser setting. However, if you choose to block or delete Cookies, this may affect the functionality of the website.
For more information please refer to our separate Cookies Page.

Access rights

You have the right to request copies of certain of your personal information within our custody and control and details of how we use that information. If you think any of the personal information we hold about you is inaccurate, you may also request it is corrected. You also have a right, in certain circumstances, to require us to stop processing your personal information.
In relation to all of these rights, please email or write to us at the address below. Please note that we may, where permitted under applicable law, charge a small administrative fee and / or request proof of identity. We will respond to your requests within all applicable timeframes.
In certain circumstances (for example where required or permitted by law) we might not be able to provide you with access to some of your personal information, but where appropriate we will notify you of the reasons for this.

Complaints Process

If you have a complaint about how we have handled your personal information you may contact us using the details below and we will investigate your complaint.

Third party sites

This Policy only applies to the site. If you land on our site from other websites (or move to other sites from our website) you should read their separate privacy policies. We are not responsible for the privacy practices of external websites.


We keep this Policy under regular review and place updates on from time to time. Please review this policy periodically for changes.
However, we will always notify you of material changes we make to this Policy and, where required under applicable privacy and data protection legislation, we will appropriately notify or give you the option to consent to changes to the Policy.
If you do not accept the amended Policy, please stop using our website.


If you have any questions about this Policy, or would like to exercise your rights with respect to your personal information, please contact us via [email protected] , +44(0)1653 699599 or write to The Encephalitis Society, 32 Castlegate, Malton, YO17 7DT.