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, Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ, telephone us on 01604 250505 or email

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.

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.

  • Page last updated: 18/01/2019

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262