Motor Neurone Disease Association ('MND' or 'us' or 'we') is a charity that focuses on improving access to care, research and campaigning for those people living with or affected by MND in England, Wales and Northern Ireland. We are a registered charity with charity number 294354. We are registered with the ICO under registration number Z6142051.

This privacy notice only applies to the personal data we collect on persons with MND or their carers when they request our support by completing the referral form or grant applications. If you are interacting with the MND Association in any other capacity, please refer to our privacy policy.

If you have any questions about this notice, including any requests to exercise your legal rights, please contact us at [email protected] or by writing to Senior Information Risk Owner at Motor Neurone Disease Association, Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ,

This notice was last updated on 2nd April 2024.

How do you use my data?

When you complete the MND referral form or the Grant Application and return it to us

 We will collect the following information about you and/or your referrer/carer. 

  • Contact Information your complete name, email address, phone number, address, date of birth, gender, 
  • Special category data about your health such as your NHS number, date when your symptoms started, date of diagnosis, type of MND, care centre, name and address of your GP surgery, details of your neurologist, details of your referrer and any other information that you may provide us that is relevant to the arrangement of your care. 

We collect this information based on your consent in order to provide you with services that you have requested.

Ethnicity and Diversity monitoring

As a part of our referral form, we also collect other special category personal data such as your ethnicity, and race. We collect this information based on your consent and to ensure that the best possible support can be provided.  This information is recorded on your record and only visible to people who need access as part of providing support to you.

The Association also uses such data to ensure that it is reaching as many people as possible and that certain groups of people are not excluded or are not aware of the services that can be offered. Data used for such purposes is anonymised and cannot be attributed to or associated with an individual.

Personal data belonging to children living with you or for whom you may have parental responsibilities

We collect personal data such as the name and date of birth of any children living with you or for whom you may have parental responsibilities. This information is collected based on your consent so that we can understand any additional needs you may have and provide you the necessary support. 

To send you information about our support services

Where you have expressed an interest in our services and requested more information, we will use your name and email address or postal address (as per your preference) to send you information about our support volunteer services or local branch/group support that you might be interested in.

You can withdraw your consent at any time by contacting us at [email protected] or, where relevant, by following the unsubscribe link in any communication you receive from us.

When you apply to become a member of MND

We use your personal data to provide you more information about our services and funding. We use this information to send you our quarterly magazine, local newsletters and updates about any events taking place near you. We use this information to provide you the information as part of your membership benefits.   

When you contact us

Either by phone, email, via our 'contact us' page or via social media, we will usually collect your name, social media handle and contact details. 

Processing your personal data

What are our legal bases for processing your personal data

We will process your personal data in most circumstances because you have requested that we provide support or services, and your request means that you (or someone who is acting for you) have consented to the processing.

We may sometimes process your personal data because it is in our legitimate interests to do so, and our interests are not outweighed or contradicted by yours. For instance we may send you information in the post about our services and funding. If it any time you wish to ask us not to send such information, you are welcome to do so, and we will not continue.

We will also process your personal data for the purposes of informing and improving our services in general, for you and other people with MND, their families and carers. We do so because it is in our legitimate interests to do so, and our interests are not outweighed or contradicted by yours. If any of the information is "special category" data (for instance in relation to your health) the law allows us to do so where it is necessary for raising awareness of MND, or for providing support to people with MND.

Who do you share my data with?

Support partners, third parties including benefits advice services, and healthcare organisations

Such as local health and social care professionals to arrange support that you have requested.

Regulators/ Authorities/ Enforcement Agencies

If we are under a duty to disclose or share your personal data in order to comply with any legal obligation, or in order to enforce or apply our terms of use and other agreements; or to protect the rights, property, or safety of our clients or others. This includes exchanging information with other companies and organisations for the purposes of fraud protection.

Where do you store my data?

We store your data on third party servers which are based in the UK and EEA.

When working with third parties we may need to transfer your personal data outside of the UK and / or EU.

Whenever we transfer your personal information outside of the UK and the EU, we ensure it receives additional protection as required by law. To keep this policy as short and easy to understand as possible, we haven’t set out the specific circumstances when each of these protection measures are used. You can contact us at [email protected] for more detail on this.

How long do you keep my data for?

We will only retain your personal information for as long as we need it

Unless we are required to keep it for longer to comply with our legal, accounting or regulatory requirements.

In some circumstances we may carefully anonymise your personal data so that it can no longer be associated with you, and we may use this anonymised information indefinitely without notifying you. We use this anonymised information to improve the way we work and our services.

What are my rights under data protection law?

You have various other rights under applicable data protection laws, including the right to:

  • Ask for access your personal data (also known as a “subject access request”);
  • correct incomplete or inaccurate data we hold about you;
  • ask us to erase the personal data we hold about you;
  • ask us to restrict our handling of your personal data;
  • ask us to transfer your personal data to a third party; 
  • object to how we are using your personal data; and
  • withdraw your consent to us handling your personal data.

In respect of all of these rights there may be times when there are legal exemptions which mean we cannot – or choose not to - comply with them.

You also have the right to lodge a complaint with us or the Information Commissioner's Office, the supervisory authority for data protection issues in England and Wales.