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Privacy Policy

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, David Niven House, 10-15 Notre Dame Mews, Northampton, NN1 2BG, telephone us on 01604 250505 or email  enquiries@mndassociation.org.

Privacy policy sections

Who we are

We are the only national charity in England, Wales and Northern Ireland focused on MND care, research, and campaigning 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
Social media
Information available publicly

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.

Building profiles of supporters and targeting communications
Legal Basis
Marketing Materials
Email/text marketing
Post/telephone marketing
Your choice
Support for individuals living with and affected by MND
Online Forums
Children's data

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 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 local volunteers, or 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 required to operate the service in accordance with legal requirements and tax and accountancy rules.  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.

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 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 enquiries@mndassociation.org 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, David Niven House, 10-15 Notre Dame Mews, Northampton, NN1 2BG.

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.


Last updated: 17/08/2017

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