What this privacy policy covers

The MND Association is committed to protecting your personal information and being transparent about what information we hold, whether you are a donor, volunteer, shopper, campaigner or a person living with or affected by MND that we support.

Developing a better understanding of our supporters through their personal data allows us to fundraise more effectively, which ultimately helps us move towards our vision of a world free from MND.  We have made improvements to this policy so that openness is at the core of what we do.

The purpose of this policy is to give you a clear explanation about how the MND Association and its subsidiary and branches and groups use the personal information you provide to us and that we collect, whether online, via phone, email, in letters or in any other correspondence or from third parties.

We ensure that we use your information in accordance with all applicable laws concerning the protection of personal information and the fundraising code of practice.  This policy explains:

  • What information the MND Association may collect about you
  • How we will use that information
  • Whether we disclose your details to anyone else
  • Your choices regarding the information you provide to us

If you have any queries about this privacy policy please contact the Senior Information Risk Owner (SIRO) at Motor Neurone Disease Association, Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ, telephone us on 01604 250505 or email [email protected].

Who we are

The MND Association focuses on improving access to care, research and campaigning for those people living with or affected by MND in England, Wales and Northern Ireland and our registered charity number is 294354.

MND (Sales) Ltd is a registered company in England and Wales number 1989172 and is a wholly owned subsidiary of MND Association which trades on its behalf.  Within the context of this policy ‘we’ means both the charity and its subsidiary.  Each of these organisations are data controllers under the data protection rules.

Where we collect information about you from

We collect information in the following ways;

  • When you give it to us DIRECTLY

You may give us your information in order to sign up for one of our events, volunteer, make a donation, purchase our products, contact our MND Connect helpline, request support or communicate with us.  Sometimes when you support us, your information is collected or processed by a third party organisation working for us, but we are responsible for your data at all times.

  • When you give it to us INDIRECTLY

Your information may be shared with us by independent event organisers, for example the London Marathon or fundraising sites like Just Giving or Virgin Money Giving.  These independent third parties will only do so when you have indicated that you wish to support the MND Association and with your consent.  You should check their Privacy Policy when you provide your information to understand fully how they will process your data.

  • When you give permission to OTHER ORGANISATIONS to share or it is available publicly

We may combine information you provide with information available from external sources in order to gain a better understanding of our supporters, to improve our fundraising methods, products and services.

The information we get from other organisations may depend on your privacy settings or the responses you give, so you should regularly check them.  This information comes from the following sources:

Third party organisations

You may have provided permission for a company or other organisation to share your data with third parties, including charities. This could be when you buy a product or service, register for an online competition or sign up with a comparison site.

Social media

Depending on your settings or the privacy policies for social media and messaging services like Facebook, WhatsApp or Twitter, you might give us permission to access information from those accounts or services.

Information available publicly

This may include information found in places such as Companies House and information that has been published in articles/newspapers.

  • When we collect it as you use our WEBSITES OR APPS

Like most websites, we use “cookies” to help us make our site – and the way you use it – better.  Cookies mean that a website will remember you.  They’re small text files that sites transfer to your computer (or phone or tablet).  They will make interacting with a website faster and easier.  There are more details in our Cookie Policy.

In addition, the type of device you use to access our website or apps and the setting on that device may provide us with information about your device, including what type of device it is, what specific device you have, what operating system you’re using, what your device settings are, and if a crash happens the reason why.  Your device manufacturer or operating system provider will have more details about what information your device makes available to us.  Wherever possible we use aggregated or anonymous information which does not identify individual visitors to our website.


We use multiple first and third party technologies such as pixel tags to track and improve the user experience on our sites, quality of service and to monitor the effectiveness of campaigns and digital marketing activity.

We may use them to:

  • see what website content is popular and how people are using the site as they allow us to track users movement through our websites.  This type of information is amalgamated so that we can build up a picture of how the site is performing.
  • make sure we offer you a consistent service. For example, if we are testing new website content or we want to run a survey, we use tracking to remember what content you have seen or if you have already been asked to join the survey.

In addition, when we email you, we may place a tag (also known as ‘tracking pixel’) on the email we send out. These let us monitor performance of our email marketing activity.

What personal data we collect and how we use it

The type and quantity of information we collect and how we use it depends on why you are providing it.


If you support us, for example by making a donation, volunteering, registering to fundraise, signing up for an event or buying something from our shop, we will usually collect:

  • Your name
  • Your contact details
  • Your date of birth
  • Your bank or credit card details


Where it is appropriate we may also ask for:

  • Information relation to your health (for example if you are taking part in a high risk event)
  • Why you have decided to donate to us
  • Any connection you may have to someone with MND


We will mainly use your data to:

  • Provide you with the service, products or information you asked for
  • Administer your donation or support your fundraising, including processing gift aid
  • Keep a record of your relationship with us
  • Ensure we know how you prefer to be contacted
  • Understand how we can improve our services, products, information and our marketing activity

If you enter your details onto one of our online forms, and you don’t ‘send’ or ‘submit’ the form, we may contact you to see if we can help with any problems you may be experiencing with the form or our website and to see if we can help you complete the transaction.

We may also use your personal information to detect and reduce fraud and credit risk.

Building profiles of supporters and targeting communications

We carry out targeted activities to ensure that we contact you with the most appropriate communication, which is relevant and timely and to provide an improved experience for you.  This enables us to raise more funds, sooner and more cost-effectively, than we otherwise would.  Profiling also helps us to make appropriate requests to supporters who may have the means and the want to give more.

When building a profile we may analyse geographic, demographic and other information relating to you in order to better understand your interests and preferences.  In doing this, we may also use additional information from third party sources when it is available, this may include third party wealth screening companies.  Such information is compiled using publicly available data about you, for example addresses, listed Directorships or typical earnings in a given area.

You can opt out of your data being used for profiling and wealth screening techniques by contacting [email protected].

Legal Basis

In certain instances, we collect and use your personal information by relying on the legitimate interest legal basis. This is because when you, for example, request to receive services or products from the MND Association, we have a legitimate organisational interest to use your personal information to respond to you and there is no overriding prejudice to you by using your personal information for this purpose. This is also the case where we process your donations in support of the MND Association’s objectives, for our internal administrative purposes, and where we need to take steps to protect our network security or risk of fraud.

We also use anonymised or unidentifiable information about you and your interactions with the association to demonstrate our impact, need for support and gaps in service provision.  This data does not identify you, but will be shared with the public, funders, politicians, service providers and any interested parties.  We have a legitimate organisational interest to use information in this way and there is no overriding prejudice to you by using your information for this purpose.

When collecting health data related to motor neuron disease, we will rely on the substantial public interest legal basis to process your health data.  This allows us as a not-for-profit organisation to process your information in relation to ‘Support for individuals with a particular disability or medical condition’

In most instances, however, we will rely on obtaining your consent for our use of your personal information. This is the case, for example, where we seek to obtain your consent to receive email or text marketing about the MND Association.

Market materials

We want to ensure you receive the level of information about the MND Association that is right for you.

Email/Text/Social Media marketing

If you actively provide your consent to us along with your email address and/or mobile phone number, we may contact you for marketing purposes by email or text message. By subscribing to MND Association emails or opting in to email communication from the MND Association, you grant us the right to use the email for both email marketing purposes and online advertisement targeting.

We use social media to promote our work, so it's possible that you might see our adverts on various platforms. To enable us to promote our cause more effectively we use tools that help us show the right advertising to the right people. One of the ways we do this is by providing some of your data to the platforms so we can show you relevant advertising as well as helping us to find people similar to you that might be interested in our work. The data provided is not used by these platforms for their own purposes only to further our work, and you are able to control the kind of advertising you see on the relevant platform.

When you opt out of receiving communications from us, such as email, you may still see adverts related to us online. This is because of information they hold, such as your age and location, or websites you have visited, without using information that has been provided by us.

Post/telephone Marketing

If you have provided us with your postal address or telephone number we may send you direct mail or telephone you about our work unless you have told us that you would prefer not to receive such information.  Before making a marketing call to you if you have not consented to these calls we will check your number against the Telephone Preference Service and only call you if you number is not present.

Your choice

It is always your choice as to whether you want to receive information about our work, how we raise funds and the ways you can get involved through volunteering, campaigning and financially, for instance through fundraising event and appeals. If you do not want us to use your personal information in these ways please indicate your preferences when we collect your data.

You may opt-out of our marketing communications at any time by clicking the ‘unsubscribe’ link at the end of our marketing emails, by sending us an “opt-out” text message or by following the instructions we provide you in our initial text.

You can also change any (email, text, mail, phone) of your contact preferences at any time by contacting our Fundraising line on 01604 6115860 or [email protected].

We will not use your personal information for marketing purposes if you have indicated that you do not wish to be contacted by us for such purposes. However, we will retain your details on a suppression list to help ensure that we do not continue to contact you.

Support for individuals living with and impacted by MND

We run services to provide support to individuals living with and affected by MND, and collect personal data in order to provide these services, this includes our MND Connect helpline, our online forum and support services run by our volunteer led branch and group network.  As part of these services you may choose to provide details of a personal nature in particular about you or someone else’s health.  Only authorised staff and volunteers will have access to this personal sensitive information and this will not be shared without your express permission.

We do use your anonymised data to show the impact of our services to the general public, funders, politicians and service providers.  This information would also be used to highlight gaps in service provision or good practice. This could mean that unidentifiable information about you, your care needs and support would be shared as case studies or in aggregated data.

Please read our service privacy policy for more information on how we use your data when you make a referral or apply for a grant.

Apps loaned by the MND association

For any loan apps requested to be installed on a user's own iPad or iPhone, or an MND Association owned iPad, a mobile device management (MDM) system called MobileIron is utilised to install the app.

The app is provided at no charge, and installed remotely using a link received by email.

  • The app will be installed on to the device and can be used for as long as is necessary.
  • No personal data is accessed from the app or device when the app is removed or swapped
  • We cannot see any personal data on the device at any point (for example: we cannot see any email, texts, login details, messages)
  • we cannot access, copy, change or delete any personal data on the device
  • we cannot see any personally added apps on the device
  • we cannot access, copy, change or delete any personally added apps on the device
  • we cannot make changes to update, delete or wipe the device itself

We will only install the app requested, and remove it when it is no longer required.

Online Forums

Our forums are a safe place to share experiences, advice and a wealth of information with other people living with or affected by MND.

We collect personal information when you register on the forums which is used to create your profile.  We also ask you for your date of birth to ensure you are eligible to use the forum.  The information we capture on the forum will not be shared.

We recommend that, although the forums are intended to be used for open discussion, you should not include any private or confidential information that you would not be happy to share publicly.

Children's data

We collect and manage information from children and aim to manage it in a way which is appropriate to the age of the child.  Information is usually collected when children attend or participate in events or fundraise for us.  But this can also be sensitive personal data – from children who apply for a Children and Young Persons grant or services.

Where possible and appropriate we will seek consent from a parent or guardian before collecting information about children.


By completing a survey, you are consenting to us using the information gathered.  Some personal information will be collected about you if you choose to participate in surveys:

  • your responses to survey questions
  • details about how you connected to online surveys
  • IP address
  • the date and time when you connected
  • some survey also includes contact details, such as
    • your name
    • address
    • email address
    • phone number

We use a data processor to process your responses.  This is done via an online survey tool hosted by Smart Survey, a market research company who are based in the UK.

Identifiable information in relation to surveys will only be retained for 12 months after the survey has completed and been evaluated, at which time survey responses will be anonymised.

If you have given permission for us to use your quotes with your name for promotional purposes these could be used at any time within a five-year period from the date of the survey.  Please be aware that once a publication is printed it is likely to remain in use for several years.  Also, our website and digital channels are available throughout the world, not just in the United Kingdom where UK law applies. 

Your responses will be linked to contact information you have provided to us, so that we can identify how individual survey participants responded to the questions.

We will use the collected information to administer the survey, to improve future surveys, to analyse aggregate trends and survey results, as well as improving our services, raise awareness of the MND Association, secure funding and highlight problems with services and support.

Legacy administration

When administering legacies, we rely upon information provided to us by Executors/Administrators appointed by the Will and, where appropriate, we may use the government’s Probate Search facility in order to obtain a copy of the Will.  We may also be informed by third parties of the death of supporters, particularly if we are named as a beneficiary in a Will.  We will keep copies of the Will record in our files in accordance with our retention schedule, but will not use personal information beyond what is necessary to administer the legacy.

How we keep your data safe and who has access

We ensure that there are appropriate technical controls in place to protect your personal details.  For example our online forms are always encrypted and our network is protected and routinely monitored.

We undertake regular reviews of who has access to information that we hold to ensure that your information is only accessible by appropriately trained staff, volunteers and contractors.

We may disclose your personal information in the following circumstances:

  • To other MND Association entities, trading subsidiaries (MND (Sales) Ltd) and service providers only to provide the products or services you’ve requested, for example, we use a separate company to deliver goods to you. We may also share your information with an event organiser if we are required to as part of your registration for an event.
  • To third parties who provide a service to us and are data processors. This would include our trusted partners that work with us in connection with our charitable purposes.  We require these third parties to comply strictly with our instruction and data protection laws and we will make sure that appropriate controls are in place.  We enter into contracts with all of our data processors and regularly monitor their activities to ensure they are complying with MND Association policies and procedures.
  • Where we are under a duty to disclose your personal information in order to comply with any legal obligation (for example to government bodies and law enforcement agencies), or in order to enforce or apply our rights (including in relation to our website or other application terms and conditions) or to protect the MND Association, for example in cases of suspected fraud or defamation.

We will only ever share your indentifiable personal data in other circumstances if we have your informed consent.  If we are involved with your care and support this may include others such as health and social care professionals.  This helps co-ordinate your care and support with local services or benefits that you might need.

Rest assured, we will never share, sell or swap your details with any third parties for the purposes of their own marketing or the monetising of your data.

Keeping your information up to date

Where possible we use publicly available sources to keep your records up to date; for example, the Post Office’s National Change of Address database and information provided to us by other organisations as described above.

We really appreciate it if you let us know if your contact details change.

Keeping your personal information

We keep your personal information only for as long as is necessary to fulfil the purposes for which we collected it, including for satisfying any legal, tax, accountancy, reporting and our legitimate interest requirements.  For marketing purposes this may be until you withdraw your consent or object to further contact. However, we will retain your details on a suppression list to help ensure that we do not continue to contact you.

To determine the appropriate retention period for personal information, we consider the amount, nature and sensitivity of the personal information: the potential risk of harm from its unauthorised use or disclosure; the purpose for which we process it and whether we can achieve these purposes through other means; and the applicable legal requirements.

If you would like more information about the retention periods we apply to different aspects of your personal data, please contact us.

In some circumstances you can ask us to delete your personal information.

We may anonymise your personal information (so that it can no longer be associated with you) for research or statistical purposes in which case we may use this anonymous information indefinitely without further notice to you.

International transfers of personal information

For financial and technical reasons we may, on occasion decide to use the services of a supplier outside the European Economic Area (EEA), which means that your personal information is transferred, processed and stored outside the EEA. This includes countries that the European Union authorities do not consider provide an adequate level of protection for personal data. However we take steps to put in place suitable safeguards to protect your personal information when processed by the supplier such as entering into the European Commission approved standard contractual clauses.

Your right to know what we know about you, make a change, or ask us to stop using your data

You have the right to ask us to stop processing your personal data, and if it’s not necessary for the purposes you provided it to us for (e.g. processing your donation or registering you for an event) we will do so.  Contact us on 01604 250505 or [email protected] if you have any concerns.

You have the right to ask for a copy of the information we hold about you.  If there are any discrepancies in the information we provide, please let us know and we will correct them.

If you want access to your information, please send a description of the information you want to see and proof of your identity by post to the Senior Information Risk Owner at Motor Neurone Disease Association, Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ.

If you have any complaints about the way in which we have used your personal information, please get in touch with us.  We will be happy to discuss your concerns.  In addition, you are also entitled to make a complaint to the Information Commissioner’s Office or to the Fundraising Regulator.

Changes to this privacy policy

We may update this policy at any time, so please do check it from time to time. If significant changes in the way we treat personal information are made to this policy, we will notify you by a primary email address or place a prominent notice on our website.