Privacy policy


Metabolic Support UK is a charity registered in England and Wales (1089588) in Scotland (SC044634) and a Company Limited by Guarantee (4267454)

Your privacy is important to Metabolic Support UK This privacy statement provides information about the personal information that Metabolic Support UK collects, and the ways in which Metabolic Support UK uses that personal information. This privacy statement aims to cover all of our activities. Metabolic Support UK may change this policy at any time in line with legislative changes or changes to the policy of the organisation. Please check our website from time to time to ensure you are aware of any changes. Metabolic Support UK adheres to the Principles of the Data Protection Act (DPA) 1998 (UK) and relevant European Union Data Protection Directives, including the forthcoming General Data Protection Regulation (GDPR).

In this policy document:
“we” or “Metabolic Support UK ” means Metabolic Support UK
“you” means any person(s) about whom we collect non-personal and/or personal

What information do we collect?

We collect and store information about those who access Metabolic Support UK’s services, in order to deliver support and advice to you (the beneficiary), to measure our impact as a charity, and to deliver financial transparency to those who raise funds for us and the Charity Commission. We work to secure explicit consent to contact you to provide support, advice and information about Inherited Metabolic Disorders, and provide future updates which may be of interest to you.

Your contact with us

If you contact us by telephone, e-mail, letter or via the contact form on our website, we retain a record of your contact to help us respond to your enquiries and provide future support and advice. We only collect this information if you provide it to us and we do not hold your information for longer than is necessary

Using our website

Like most websites, our server gathers limited, non-personal information about you during a session, including the IP address and domain name from which you are accessing the server and your browser configuration. This information is only used to help us improve the content, design and performance of the site, and is not linked to the identity of any individual user.

Our website uses cookies (small pieces of information that are transferred to and stored by your browser on your computer) to enable basic, anonymous, web traffic analysis using Google Analytics. This analysis shows us which areas of the site are popular and those that are not often visited which helps us to use our website resources in the most effective way. The information generated relating to our website is used to create reports about the use of the website. Google will store this information. Google’s privacy policy is available at: These cookies will remain stored on your computer until deleted, or until they reach a specified expiry date. You can choose to accept or decline cookies. Most web browsers automatically accept cookies, but you can usually modify your browser setting to decline cookies if you prefer. This may prevent you from taking full advantage of the website. In no circumstances do we collect any data that is not directly related to the use of the website (for example, we do not record other sites that you have visited)

Membership and mailing lists

In order for our members to receive our magazine, we hold records of their names, addresses, telephone numbers and e-mail addresses. However, we only collect this information from you if you choose to provide it to us.

We hold contact details for those who have ‘opted in’ to receive information from Metabolic Support UK which may be in relation to developments, research, events, fundraising and updates on our work with Inherited Metabolic Disorders. We do not pass your information to third parties without your consent. You may choose to stop receiving information at any time by contacting us (details below).


We collect the personal information of individuals who undertake fundraising activities for Metabolic Support UK , or take up charity places for Metabolic Support UK ’s fundraising charity events. This is collected to support you in your fundraising efforts, and to monitor success

We will not contact you about other things without your explicit permission. Metabolic Support UK uses Charity Checkout to administer it’s online donations. Charity Checkout collects and holds information on fundraisers and donors in order to fulfil its role. You can view Charity Checkout’s privacy policy here. Metabolic Support UK also works with Virgin Money Giving and Just Giving as online fundraising platforms you can view their respective privacy policies here and here. Metabolic Support UK has access to the fundraising information from these platforms, which is used and stored for accounting purposes. We will not contact a donor or fundraiser without explicit permission, which is requested during the platform’s sign-up process.

Social media and blog

Metabolic Support UK is active on Facebook, Twitter and Instagram. We do not collect data from these social media sources, though we will endeavour to answer enquiries and messages directed to us through these sources. All messages sent to Metabolic Support UK in this regard are governed by the privacy policies of the chosen platform. We may post and share stories and testimonials as provided by you, but will only do this with your prior consent.

How long do we keep your information?

We keep your information for as long as is necessary to deliver advice and support effectively to you, and track our charity impact. Your data will be retained securely, and should you wish, you may at any time ask us to destroy any personal information that we hold on you so that you receive no further information or contact from us.

Who has access to your information?

Metabolic Support UK ‘s staff have access to the personal information as provided by you. As detailed above, we may use third parties to facilitate fundraising services on our behalf, including Charity Checkout, Virgin Money Giving, and Just Giving. Those parties only collect and hold the information they need to deliver the service, though data is held in accordance with their own privacy policies. We will not share your information with any third party without your consent


We publish information leaflets, magazines and newsletters for our subscribers and those that interact with Metabolic Support UK . From time to time we may use case studies, stories, quotes or images of patients, families and supporters as provided to us by you. We never publish any information or image without clear consent from those concerned. We might use quotes in our promotional materials, publications and conferences but will always ask your permission if anything in the quotation is identifiable.

Accessing the information we hold about you


We have implemented technology and policies to protect your privacy from unauthorised access and improper use and will review these measures on a regular basis. While we cannot ensure or guarantee that loss, misuse or alteration of data will not occur, we shall endeavour to prevent this.

Links to other websites

Metabolic Support UK’s website ( may contain links to selected websites which we feel may be of interest. Please note that once you use one of these links to leave our website, we do not have any control over that other website. Please exercise caution and refer to their privacy policy and/or terms & conditions of use as we cannot be held responsible for the protection or privacy of any information you provide to a third party.

Any questions about privacy?

If you have any questions or concerns about how we protect your personal information, please contact us.


Telephone: 0845 241 2173

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