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 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 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
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:
Glut1 Deficiency UK may collect and process the following information about you:
Any information we collect from you on this website will only be used by Glut1 Deficiency UK for the following purposes:
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.
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.
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.
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.
Under data protection law, you have the following rights:
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.