By visiting our website, you agree to your personal information being used and disclosed in the manner set out in this Policy.


The Encephalitis Society aims to improve the quality of life of all people affected directly and indirectly by encephalitis, by:

  • Providing support and information.
  • Raising awareness.
  • Promoting and collaborating on research.

Encephalitis Society is a charity registered in England and Wales (1087843) and Scotland (SC048210) and a company limited by guarantee and registered in England and Wales (04189027).

The Encephalitis Society’s office is at 32 Castlegate, Malton, North Yorkshire, YO17 7DT, UK.

The Data Protection Officer at the Society is the Director of Services- Phillippa Chapman.

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, online chat service, social media pages, telephone and providing your information, you agree to the information you provide being collected, used and disclosed in the manner set out in this Policy.

You are not required to provide personal data to us. Note, however, that your failure to do so may affect our ability to provide the Services you request.

What data and how we collect it?

‘Personal information’ means any information that identifies a living person. This can include name, address, phone number, email address, IP address. There is other type of data “special categories of personal data” which includes information about individuals’ racial or ethnic origin, health, sex life, sexual orientation, political, religious or philosophical beliefs, genetic and biometric data and trade union membership.

When you use our website as is the case with most websites, certain limited information (such as your browser type and IP address) will be collected by us automatically. If you use any of the email facilities or forms on our website, we will capture your email address, your name and, where relevant, your postal address and financial information.

This means we can respond to your request, enquiry or order. We will ask if you want to opt in to being contacted in the future by telephone, email or post.

We will also collect information about you when you make a donation online, by telephone, by post or in person (for example, at a community event). This information may include your bank details, name, email, address, postal address, telephone. When you make a donation via our website, this information is stored on a secure server. You can also donate to us via PayPalVirgin Money GivingJust Giving - these providers have their own privacy statement which we recommend you read before using.

If you use our Support Service (submit a support enquiry and/ or join the Connection Scheme) or become a member of our Society, we may collect special category of personal data (sensitive information) about you such as details about your illness, the after-effects, your age and a history of your contacts with us.

We will ask for your explicit consent to record and process this type of data. 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. If required for research, we sometimes anonymise the data about the illness and after-effects and share with researchers. This anonymised data cannot identify you. For example we may keep records of and share how many cases of viral encephalitis we had in one year.

We will also collect your personal data when you register for an event or apply for a job or to become a volunteer.

When you register for an event for which you need to pay, we will also collect your bank details.

We may use profiling and screening methods to increase our understanding of our supporters and provide a better service and experience for you. This helps us to make appropriate requests to supporters who may be able to help with fundraising, research or events. When building a profile we may analyse geographic, demographic, and other information related to you (e.g. type of encephalitis). This is to understand you better so we can contact you with the most relevant communications.

We work with some event / challenge organisers and fundraising platforms that collect your personal information as part of the registration process (e.g. Virgin Money Giving and Just Giving). If you have consented to contact from Encephalitis Society as part of registration, your contact details will be passed to us and we will contact you as referenced by the third-party supplier.

If you take part in a survey run by Encephalitis Society you use an online service called SurveyMonkey which holds data in the EU. For more information, read Survey Monkey’s Privacy Policy . We hold survey data on Survey Monkey until the survey is closed.

Why we hold your data?
We hold your personal information for a number of purposes:
• To communicate with you as a supporter and service user.
• To respond to your support enquiry or request for information.
• To provide you with the services you requested.
• To keep a record of any contacts we have with you
• To help you with any problems you have navigating our website.
• To administer donations made (and claiming Gift Aid, if applicable).
• To process sales, managing orders, delivering items you have ordered.
• To personalise the look and feel of our website (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;
• To provide users with fundraising related news stories, event information, and updates on campaigns or fundraising.
• To help us prevent fraud associated with online payments.
• To improve the service we offer – for example you may be asked to complete one of our online user satisfaction surveys.

Compliance with GDPR and 2018 Data Protection Act

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. Your consent can be withdrawn at any time. 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.

Other instances we use legitimate interest to process data:
1. Processing employee data and employment applications
2. Processing volunteer applications
3. Health and social care professionals
4. Third parties and suppliers
5. Other organisations (e.g. other voluntary organisations)
6. Corporate sponsors
7. Trusts and foundation
8. Responding to enquiries
9. Other research organisations.
10. Visitors to our websites
11. Our social media audience

Communications from us
Where you have indicated you would like to receive updates about our work, encephalitis, news and events we may send communication using your personal preferences which you have told us about.

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 make sure you can unsubscribe from receiving our communication by following the ‘unsubscribe’ instructions included in our communication or at any time by contacting us on or call +44 (0)1653 692583. If at a later date, you give different contact preferences, we will use those you have given most recently.

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.

Social media
When you use social media channels (Facebook, Instagram, LinkedIn and Twitter) messaging services to communicate with us, you may share personal and special category of data. Please check their own privacy policies for information on how they handle personal data.

We may use your details to contact you with updates and information relating to your fundraising. This depends on your own privacy settings for social media and messaging sites such as Facebook, Instagram, LinkedIn and Twitter. We will only do this for events you have expressed an interest in, or registered for. We may also use your details to promote other activities or events on social media platforms. To control these adverts you should amend your social media platform settings.

We use Facebook advertising to raise awareness of encephalitis and our services, promote our membership, events and campaigns. You can control these adverts by amending your Facebook settings. For more information on how Facebook handle the data please visit their Data Policy.

Providing information to others
We do not sell or rent your information to anyone.

The special category of personal information about you will NOT be shared with anyone or any organisation outside the Encephalitis Society unless required by law.

We work closely with a number of trusted partners with whom we need to share some personal information to help us operate our services 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.
• HM Revenue & Customs, but only if we need to authorise claims for Gift Aid or other forms of tax efficient ways of giving.

We collaborate with researchers and institutions in the encephalitis research field and we may share anonymised data about the illness and its after-effects.

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.

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. 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. 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.

These organisations are only allowed to use your personal information for the specific purpose they have been contracted for. All suppliers handling any personal data are subject to a data processing agreement, which is legally binding and controls what they are able to do with the data.

Live Chat
We use live chat software on our website, this is provided by, a 3rd party USA based company. Information regarding how data is processed and stored can be found via their Privacy Policy.

We have developed an app with our suppliers The Distance that captures users email, name, and some details that are optional such as age and association with encephalitis. Data is held on the Distance’s database securely and they comply with data protection processes. We transfer this data to our database as per our policies.

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 also have the right to object to any of our methods of contact at any time by using given opt out ways of any contact at any time. You can also do this by contacting us using the details below.

Keeping your data
We keep data 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 analyses 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 under their Privacy Policy.

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 publicly visible (for example to friends, followers or generally to anyone who has access to your profile page).

You can offer feedback to use in our BrainWalk app that is anonymous.

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 Policy

Your rights
You have the right to request copies of the information we hold about you 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 to require us to stop processing your information, your data to be erased from our records, transfer the data to another country, restrict the way your data is processed and challenge certain types of processing (e.g. direct marketing).

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 Encephalitis Society website 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 our website 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 , +44(0)1653 692583 or write to Encephalitis Society, 32 Castlegate, Malton, YO17 7DT, UK.