Privacy Policy

Terms and Conditions

Unless stated otherwise, the contents of the Glut1 Deficiency UK website has been written by the Trustees of the charity. The website is to support and guide families and professionals by providing information and is not to be taken as medical advice. Families or Patients are urged to contact their medical team if they are uncertain or have any queries about their or their child’s condition or treatment.


The Glut1 Deficiency UK charity owns and runs this website. The charity needs to collect and use certain information about you when you interact with us or use any of our services.

We are committed to protecting your privacy and take the security of your information very seriously.

It is our aim to be clear and transparent about the information we collect about you and how we will use that information.

This policy provides the following information:

  • The Data Controller
  • The Data Protection Officer (DPO)
  • What Information we collect
  • What Health Information we collect
  • What we use your Information for
  • How long will we hold onto your Information
  • Who will have access to your Information
  • Your Rights
  • Complaints

The Data Controller

The Glut1 Deficiency UK charity is the Data Controller for all personal data which is collected and used by this website.  The Data Controller is the legal entity which determines how and why personal data is collected and used. We are based in the UK and governed by UK data protection law.   The Glut1 Deficiency UK charity is located at:

GLUT 1 DEFICIENCY UK 49 Pirtland Road, Great Sankey, Warrington WA5 8DJ

The Data Protection Officer (DPO)

The Glut1 Deficiency UK charity has appointed a Data Protection Officer to oversee Glut1 Deficiency UK compliance with its data protection obligations. The Glut1 Deficiency UK Data Protection Officer (DPO) can be contacted directly at

What Information we Collect

Personal data means any information relating to you which allows the Foundation to identify you, such as your name & address, contact phone numbers and email address.

Most areas of the Glut1 Deficiency UK website can be accessed by you without the need for you to provide any of your personal data. Some areas, though, require you to submit your name, email address, and other contact details, for example:

  • When you become a member of our online community
  • When you seek advice and information from us
  • When you register for one of our services
  • When you contact us through social media
  • If you wish to support, volunteer, donate, help us with fundraising or assist us in anyway
  • If you submit a media query

Glut1 Deficiency UK may collect and process the following information about you:

  • Name, address, contact telephone phone number, email address
  • Gender
  • Your reasons for contacting us
  • The communications you exchange with us
  • IP address
  • Information about your use of the website (see Cookies & site tracking)
  • Your association with Glut1 Deficiency UK (for example, patient/ carer/ parent/ healthcare professional/ fundraiser/ volunteer)

What we use your Information for

Any information we collect from you on this website will only be used by Glut1 Deficiency UK for the following purposes:

  • Communicate with you as a supporter and service user.
  • Respond to your enquiry or request for information.
  • Process sales or donations and verify financial transactions.
  • Keep a record of any contact we have with you.
  • Prevent or detect fraud.
  • Enable third parties, working for us, to carry out technical or logistical functions for us.
  • To carry out research on the demographics, background and interest of our supporters and users of our services. This is to get a better understanding of them and improve our services.
  • Tell you about the things you have told us you are interested in – if you have given us permission to.
  • To send you updates and information
  • To notify you of upcoming events

How long will we hold on to your Information

Glut1 Deficiency UK will only retain your information for as long as legally necessary. When Glut1 Deficiency UK no longer needs your information it will securely delete your information.

Who will have access to your Information

Only Glut1 Deficiency UK staff, agents and volunteers who are directly involved with the management of the website shall have access to your information which is collected by this website.

All Glut1 Deficiency UK staff, agents and volunteers who may have access to your information shall be bound to confidentiality agreements and are obliged to keep your information secure, and to use it only for the purposes specified.

The Security of your Information

Glut1 Deficiency UK shall maintain the security and confidentiality of all the information which is collected and processed by the website. The information is processed in compliance with UK data protection laws and stored within a secure hosted environment within the UK.

Secondary Processing of your Information

Glut1 Deficiency UK will not use the information we collect about you on the website for any other purposes without first contacting you and seeking your consent, or anonymising your information to remove all your personal details making it impossible to identify you.

Your Rights

Under data protection law, you have the following rights:

  • 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 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 information in certain circumstances.
  • Your right to object to processing – You have the the right to object to the processing of your personal data in certain circumstances.
  • Your right to data portability – You have the right to ask that we transfer the 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.

Changes to this Privacy Policy

This Privacy Policy may change from time to time and any changes to the Policy will be communicated by of a notice on our website.

Cookies & Site Tracking

This website uses cookies to enable Glut1 Deficiency UK to improve its service to you. Cookies are small text files which are downloaded to your computer device when you visit a website. Your web browser (for example, Internet Explorer, Microsoft Edge, Mozilla, Google Chrome etc) then sends these cookies back to the website on each subsequent visit so that they can recognise you and remember things such as your preferences.