Privacy Notice

The Motor Neurone Disease Association (charity number 294354) focuses on improving access to care, research and campaigning for those people living with or affected by MND in England, Wales and Northern Ireland 

MND (Sales) Limited (company number 1989172) is registered in England and Wales and is a wholly owned subsidiary of MND Association which trades on its behalf. 

Within the context of this policy ‘we’, ‘our’ means both the charity and its subsidiary.  Each of these organisations are separate data controllers on the UK Data Protection Register.

Motor Neurone Disease Association registration reference Z6142051
Motor Neurone Disease (Sales) Limited registration reference Z5467987

MND is a progressive, life-shortening disease with no cure. We provide support, information, campaign and fund research. We wouldn’t be able to continue our fight for a world free of MND without your involvement and support.

As a charity, it is important for the MND Association to be able to collect your data to process your enquires, donations, support people living with MND, and other ways you connect with us. 

Developing a better understanding of our supporters through the collection of your personal data helps us to share information about our cause and raise money in a more efficient and cost-effective way, ensuring we only send you relevant communications. It also helps us to improve the services we provide to people living with MND their carers and or family members.

Here is a list of the types of information we collect from you, depending on your interaction with us:

• Your first name or initial, and surname.
• Your email address.
• Your telephone number.
• Your postal address.
• Your year of birth for validation purposes.
• Your transaction ID.
• Your Gift Aid declaration.
• A record of our communications with you.
• Your communication preferences.
• Your giving history.
• Your purchase history.
• Your browsing history (see section: Information from your devices (automatically)).
• Your interests, and reasons for your support.
• Your enquiry about our services.
• Your next of kin details, such as when you are participating in a Challenge Event.
• Photography, transcripts and videography, such as images at events, case studies and other marketing materials.

Where it is appropriate we may also ask for:

• Information relating 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
• Information collected when requesting information or support about MND, such as details relating to your personal circumstances.
• Limited medical information if you are taking part in an event (e.g. if you are an asthma sufferer). 

Most of the data we process is given to us directly by our supporters, people affected by MND during any interactions with us and through our local support groups.

The ways we collect this data are set out below: 

Data collected online 

We collect personal information from you when you visit our websites, online forum, interact with us via a social media platform using a smartphone or computer (for example, by storing your account information), online surveys, and when you directly contact us. Some of this information is provided by you, and some of it is collected from your devices automatically. 

Information you provide

When you use our website to make an enquiry to our MND Connect helpline, join the MND register, engage on our online forum, volunteer, register for an event, or making a donation, you’ll need to give us some details, so we can do what you’ve asked us to do.

Similarly, if you make an enquiry, want to register as a volunteer, or make a donation by telephone or post, you’ll need to share some basic information about yourself.

Usually this will include:

• Your first name or initial, and surname.
• Your email address.
• Your telephone number.
• Your postal address.
• Your payment details if you’re donating.
• Your connection with MND.

We don’t store any of your payment details either online or through cheques. Instead, we’re given a transaction ID by our secure payment processor to complete the transfer, or the cheque is banked without your bank details being stored. Sensitive information shared is handled securely, with access given only to those that need it to action your enquiry.

Information collected automatically from your devices

When you browse our website or our social media platforms, your device will exchange information with these platforms to ensure you have the best experience when navigating.

Our platforms may pick up the following:

• IP (Internet Protocol) address: your IP address indicates your location, unless you are using a VPN (Virtual Private Network) service.
• MAC (Media Access Control) address: this is a unique identifier assigned by the manufacturer of your device.
• Device: what type of device you are using (e.g., smart TV, smartphone, laptop, desktop).
• OS (operating system): what operating system your device has (e.g., IOS, Android, Windows, Linux, MAC OS X).
• Browser type and browser version: which web browser you are using (e.g., Internet Explorer/Edge, Opera, Chrome, Safari, Firefox).
• Domain: depending on your device and browser settings, we sometimes identify the web address of the domain you came from before landing on our platforms.
• Clickstream data: this is a list of all of our web pages that you visited, and the order you viewed them in, on each visit to https://mndassociation.org. We also record how much time you spend on each web page and record any actions you make on each page.
• Cookies: these are small text files that our website places on your device, so that our website can remember something about you and optimise your experience when you visit our website. There are also some third-party cookies we place on your device. We use a cookie preference centre where you can select which cookies you want to accept when you first visit or change your cookie preferences when you revisit our website. For more information on the specific cookies that we use and their function, please see our Cookies Policy.

Data collected by post and by phone

If you call or write to our Fundraising Team, Supporter Service Team, MND Connect line, or local support groups we may collect the following information about you:

• Your first name or initial, and surname.
• Your email address.
• Your telephone number.
• Your postal address.
• Your transaction ID.
• Your experience with MND

We routinely record incoming telephone calls from external lines. Recordings are made for training, monitoring and auditing purposes, and sometimes for legal reasons, such as providing information to agencies like the police in specific situations. An automated message informs you that we record calls and why. Call recordings are kept in line with our retention schedule of 3 months and then deleted. We may retain for a longer period for training purposes

Data collected by other organisations and third parties:

Third party data suppliers

Sometimes we will obtain your personal information from third-party data suppliers, but only if they provide the appropriate evidence that you have agreed for your personal information to be shared with us.

Usually this will include:

• Your first name or initial, and surname.
• Your email address.
• Your telephone number.
• Your postal address.
• Your transaction ID.

You should check any Privacy Notice provided to you where you give your data to a third party.

Partner organisations

Your information may be shared with us by independent event organisers, for example the London Marathon or fundraising sites such as JustGiving and GoDonate. These independent third parties will share with us the data captured for your donation or activity along with your consent or preferences.
The third party will need to share data with the MND Association to process your data. You should check their Privacy Notice when you provide your information to understand how they will process your data.

Other organisations or is available publicly

We may combine information you provide with information available from external sources to better understand 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 like us. This could be when you buy a product or service, register for an online competition or fundraising event or sign up with a comparison site.

Social media

Depending on your settings or the privacy policies for social media and messaging services like Meta, WhatsApp, LinkedIn 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.

Simply put, your personal data may be used to help us effectively deliver our charitable services or raise funds for those charitable services and deliver the best service to people living with MND, their carers and family members.

The MND Association will never sell your data to third party companies or organisations. We may share your data with carefully selected and screened business partners for marketing, fundraising, and business insight purposes, following data protection best practices. Please see the Disclosing your information section for more information.

Here are some examples of how we use your data:

Service Provision – Follow this link to review our Service Provision Notice

Marketing and fundraising

• To send you marketing information including our magazine, updates about our research, general information about MND, and various ways you can support the MND Association, including fundraising activities, fundraising events, research studies, campaigning, conferences, road shows or local support group events.
• To send you online targeted advertising through social media platforms sharing the most up to date information about the MND Association.
• To efficiently raise the fundraising income to enable us to help more people living with MND.
• To manage, facilitate and record financial transactions associated with fundraising.
• To manage events and fundraising, we’ll support and advise you when you take on a challenge or other activities for the MND Association. We may also contact you if you set up a fundraiser on platforms like Meta or JustGiving.
• To ensure that as many supporters as possible maximise the value of their donation through Gift Aid.

Legacies

• If you have been in touch with us about leaving us a legacy, we will manage and administer your legacy pledge.

Events, webinars and training courses

• To process registration fees (sometimes through third-party websites) and administer events, webinars and training courses.
• To collect and store images and videography with the purpose of promoting future fundraising events.

Surveys

• We will survey portions of our supporter database periodically to find out more about your experience of connecting with MND Association, how you use our services, and how we can improve our service delivery to you. We will not confuse this with marketing or promotional messages.

Segmentation, profiling, and prospect researching

• As a charity, we use analysis, targeting and segmentation activities to better understand our supporters so we can send you updates and marketing we think you’ll be interested in.
• Sometimes we use profiling or screening techniques to analyse your personal data. This helps us ensure we provide you with the best experience, tailoring the things you may want to hear from us. We may also anonymise and aggregate information to find other groups of potential new supporters.
• We may also, for some supporters from time to time use research tools such as working with specialist agencies, publicly available sources, and social network platforms to recognise potential interest with supporting the MND Association with a substantial gift. This means we can tailor our communications and identify individuals who may have an affinity to our cause but and we are not already in touch.
• We also use publicly available sources to carry out due diligence on donors to meet money laundering regulations.  This research helps us to understand more about you as an individual so we can focus conversations we have with you about fundraising and ways you can connect in the most effective way and ensure that we provide you with an experience as a donor or potential donor which is appropriate for you.

When you get involved in research with the MND Association

• You may apply as an academic to be a part of research projects or get involved with MND research by filling out a survey to test new treatments. As an academic, we collect information such as name, contact details, academic and professional background, which is saved on our grant management system. We need to understand the academic’s history to avoid conflicts of interest in peer review and grant evaluation, e.g. we need to know if two academics are married.  The MND Association does not collect the personal data of any research subjects that sign up to be a part of the research projects endorsed by the MND Association.

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.

We may provide some of your details to digital advertising platforms or social media companies who we advertise with, such as Meta, TikTok and Google. We will only do this with your consent which we collect in our cookie banner in ‘Targeting Cookies & Tracking’. This allows the MND Association to tailor messages and marketing that we think may interest you. You can always change your mind by updating your preferences on the social media platforms, or by returning to our cookie banner and change your preferences.

Google Analytics

We have implemented Google Analytics Advertising features on our website, to help us gain insights into how our website is being used, our audience’s demographics and interests and which marketing channels are most effective at reaching our audience. We assure you that all data collected through these tools will be used solely for the purposes of improving our website and our marketing efforts.

By using these tools, we are allowing Google Analytics to associate your browsing information on our website with other Google information. This Google information may include user location, search history, YouTube history, and data from sites that partner with Google — and is used to provide aggregated and anonymised insights into our users’ behaviour across multiple devices. We are also linking Google Analytics data with other Google products, such as Google Ads. This data sharing is aggregated and anonymous and helps us understand behaviours and campaign success.

How to opt-out 
We understand that some visitors may prefer to opt-out of the Google Analytics Advertising Features we use on our website. The easiest way to opt-out of this is to decline all but strictly necessary cookies, from within our cookie consent banner when you first visit our website (see how to manage your cookie settings on the Cookie Policy section). If you do not wish to participate in these features across all websites, you can also opt-out by using the Ads Settings on your web browser or the Ad Settings for mobile apps. These settings allow you to control how Google collects and uses data for advertising purposes across the web and on mobile apps. Additionally, you can also install the Google Analytics Opt-out Browser Add-on, which prevents Google Analytics from collecting information about your website visits. Please note that opting out of these features may impact your experience on our website and may limit our ability to effectively reach our audience.

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

When you visit our website for the first time, you will see a cookie banner. This banner allows you to accept or decline non-essential cookies. Please note, essential cookies are needed for our website to function and cannot be declined.

These pieces of information are used to improve services for you through, for example:

• measuring how many people are using services, so they can be made easier to use and there’s enough capacity to ensure they are fast
• recognising that you may already have entered a username and password, so you don’t need to do it for every web page requested

A cookies tool is used on our website to gain consent for the optional cookies we use. Cookies that are necessary for functionality, security and accessibility are set and are not deleted by the tool.

Types of cookies

Strictly necessary cookies – are set by default and you cannot opt-out of these. They are essential to help operate the site without disrupting your experience.

Performance cookies – collect information about how users interact with our website over time, so we can analyse user behaviour and make it better for you to use. All information collected is anonymous.
Functionality cookies – help improve your experience on our site, by remembering your preferences so you don’t have to select them again.

Targeting cookies – are a selection of third-party cookies used to track any advertising you may have seen before visiting our website.

After making your choices and wish to continue to our website, click the ‘Confirm my Choices’ button or you may want to click “Allow All”. You will not see the cookie Privacy Preferences Center pop-up again when you return to the page.

Changing your mind
If you want to change your cookies preferences after you have made your selections, you can do this any time through the cookie customisation tool (the cookie logo in the bottom left-hand corner of your browser window. This tool enables you to toggle specific categories of cookies (e.g., analytics, advertising) on or off.

The MND Association processes your personal information under the following lawful basis under Article 6 of the UK GDPR apply:

Consent
In some cases, we will rely on your explicit consent, for example, to send you marketing and fundraising emails, automated phone calls and text messages; or to use your image or a case study about you, for surveys, dietary requirements or reasonable adjustments for our events. We would also rely on your consent to share your information with other specialist organisations, for example event organisers. 

Legitimate interest
Under UK GDPR, the MND Association will use this legal basis for processing, if we feel that the use of personal data is legitimately in the interests of the charity, provided there is no disproportionate impact of our activities on you for example, when we process your donations to enable your participation in our campaigns and to support your attendance at our events.

We also rely on legitimate interests to carry out analysis, targeting and segmentation activities to better understand our supporters, to undertake profiling and wealth screening using information from publicly available sources or specialist agencies, review your applications for joining our research projects and to tailor our communications and supporter engagement activities. Where possible, we may anonymise and aggregate information to assess our impact, identify trends and help us reach new supporters.

Contract
In some cases, we will contact you under the legal bases for processing under Contract. For example, when you support the MND Association by completing a Direct Debit form or purchase any items from our online shop.

Legal obligation
Sometimes we may have a legal obligation to process information about you – for example, we are obliged to keep financial records including Gift Aid for six years. We are required to keep a record of your communication preferences, in accordance with the UK General Data Protection Regulation. We may also need to process and share your personal information where required to comply with safeguarding duties or where disclosure is required to comply with other legal or regulatory requirements.

The MND Association uses secure CRM systems to store, and manage your data, with schedules in place to ensure those systems are kept up to date with the latest security features. We will never sell your data to third party companies or organisations, we use carefully selected and trusted business partners to assist with the data management of transaction data processing, marketing and business insight purposes. The information these business partners process includes the personal information we gather about you and your interactions with us, transaction and online history with us. 

We may share your personal data in the following circumstances:

• With your consent, where you have explicitly agreed to the disclosure.
• Where necessary to provide a service, you have requested, including sharing data with service providers acting on our behalf.
• Where required for the performance of a contract with you.
• Where we have a legitimate interest, provided that such interest is not overridden by your rights and freedoms.
• Where we are legally required to do so, including compliance with legal obligations, regulatory requirements, court orders or lawful requests from public authorities.

We require all third parties to respect the security of your personal information and to treat it in accordance with the law. We do not allow our third-party service providers to use your personal information for their own purposes and only permit them to process your personal information for specified purposes and in accordance with our instructions. Some of our partners run their operations outside of the EEA (European Economic Area) and this may include countries who have different data protection laws. We will always take steps to make sure appropriate protections are in place (in accordance with UK data protection law) to protect your personal information when processed by the supplier. This includes measures such as entering into the European Commission approved standard contractual clauses and carrying out assessments to ensure that your personal data continues to be protected to an essentially equivalent standard.

We keep your personal information only for as long as is necessary to fulfil the purposes for which we collected it. Typically, our retention period for keeping data in our secure systems is 7 years. For example, when you make a donation, express interest or leave a legacy gift, enquire about or receive our services or products, or make a purchase from our shop.

There may be occasions when we may keep data for longer than 7 years. For example, your interaction is a complaint, to be able to recognise a legacy gift as this could take decades until the gift reaches us and we are required to evidence the history of the legacy left to the MND Association. 
Some anonymised personal information may be retained by us in archives for statistical or analysis purposes.  We will only do this in a manner that complies with the applicable data protection law. 

If you decide you no longer wish to hear from us, we’ll need to keep a note of that on our suppression list indefinitely.

If you’d like more information on our retention policy, please see our contact details in the “How to raise a concern with us” section.

The MND Association is committed to protecting your data, ensuring we have robust systems, procedures and policies in place to protect the data you share with us. Personal information we collect is stored and encrypted within our secure UK/EU IT infrastructure to provide the highest level of security, with only authorised personnel having access for its intended purpose.

Any time we transfer personal information within our organisation or to our subcontractors, we use an HTTPS secure connection, so the transfer of data is encrypted and safe. We only grant access to our subcontractors when there is an absolute need, therefore This means we always have privacy and security in mind when updating our policies.

You’re legally entitled to your information under the UK GDPR and the Privacy & Electronic Communications Regulation (PECR). You can also object to the MND Association processing your data – either automatically or otherwise – if it’s causing you distress, or if the information is inaccurate, or if you object to the marketing messages, or if you would simply like it removed from our IT infrastructure.

Your rights regarding your personal data are:

• The right to access a copy of your personal information that we hold.
• The right to object to our processing of your personal data, if our doing so causes you distress.
• The right to prevent the MND Association processing your data for direct marketing purposes.
• The right to object to decisions being taken using automated means that includes your personal data.
• Your right to have inaccurate personal data rectified or destroyed.
• Your right to have your data erased from our IT infrastructure
• The right to data portability.
• The right to be informed.

The Information Commissioner remains the UK’s independent advisory authority on data protection.  You can find out more about your personal data rights in the UK from the Office of the Information Commissioner, www.ico.org.uk.

If you wish to raise a concern with the way in which we have used your personal information, please get in touch with us in the first instance.  We will be happy to discuss your concerns to resolve your query.

Phone: 01604 250505

Email: support.services@mndassociation.org

Post: Supporter Services Team, Motor Neurone Disease Association, Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton NN3 6BJ

In addition, you also contact the following regulatory bodies.

You can register with the fundraising preference service (FPS). This service is run by the Fundraising Regulator and allows you to stop email, telephone, addressed post, and/or text messages from a selected charity or charities by using the online service at public.fundraisingpreference.org.uk or by calling 0300 303 3517. Once you have made a request through the FPS, we will ensure that your new preferences take effect within 28 days.

You also have the right to contact the Information Commissioners Office (ICO) if you have any concerns about Data Protection using their helpline 0303 123 1113 or at www.ico.org.uk.

If you have questions regarding your data or you want to request a copy of your personal information that we store, free of charge, you can write to:

Senior Information Risk Officer, Motor Neurone Disease Association, Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton NN3 6BJ

Or email: dataprotection@mndassociation.org

This Privacy Notice may change from time to time. For example, we will continue to update it to reflect new legal requirements or improvements for the way we manage your information. We will notify you by a primary email address or place a prominent notice on our website. You can also visit this website page to keep up to date with the changes to our Privacy Notice.

Latest update: January 2026