Gastrostomy Choice website privacy policy

Updated June 2024

Our contact details

  • Motor Neurone Disease Association
    Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ
  • Phone number: 01604 250505
  • Email: enquiries@mndassociation.org

The type of personal information we collect and process

When you register to use the Gastrostomy Choice website, we collect and process the following information:

  • your email address
  • any text you enter into the free text box on the ‘Your decision’ page of the website

We also use third-party technologies such as Google Tag Manager and Google Analytics. However, if you opt-out of tracking cookies when you visit the site, we will not collect your data in this way. This data is anonymised and is not linked to your email address.

How we get your personal information and why we collect it

The personal information we process is provided to us directly by you for one of the following reasons:

  • To enable you to log in to use the site
  • To send emails to new registered users and for password update . We do not use the data you give us on this site for marketing purposes.
  • Our use of Google Tag Manager and Google Analytics is to track and improve the user experience on the site and to monitor how much the site and individual pages on it are being used.

The website was developed in collaboration with the University of Southampton and Marie Curie. We do not share any personal data with these organisations.

Under the General Data Protection Regulation (GDPR), the lawful base we rely on for processing this information is your consent. You can remove your consent at any time by contacting education@mndassociation.org

How we store your personal information

Your email address and the ‘Your decision’ free text is securely stored on the web server that runs the site. We do not download this data to our own computers. We will keep this data so you are always able to come back to the site and log in again. We review the user accounts yearly and will delete any accounts where a user has not logged in for more than 2 years.

Your data protection rights

Under data protection law, you have rights including:

Your right of access - You have the right to ask us for copies of your personal information.

Your right to rectification - You have the right to ask us to rectify personal information you think is inaccurate. You also have the right to ask us to complete information you think is incomplete.

Your right to erasure - You have the right to ask us to erase your personal information in certain circumstances.

Your right to restriction of processing - You have the right to ask us to restrict the processing of your personal information in certain circumstances.

Your right to object to processing - You have the the right to object to the processing of your personal information in certain circumstances.

Your right to data portability - You have the right to ask that we transfer the personal information you gave us to another organisation, or to you, in certain circumstances.

You are not required to pay any charge for exercising your rights. If you make a request, we have one month to respond to you.

If you wish to make a request, please contact the Senior Information Risk Officer (SIRO) at:

  • Motor Neurone Disease Association
    Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ
  • Phone Number: 01604 250505
  • Email: dataprotection@mndassociation.org

How to complain

If you have any concerns about our use of your personal information, you can make a complaint to us at dataprotection@mndassociation.org

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