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Who we are:

We are Ursula and Alex Green, parents of a child with a HUWE1 mutation and we live in the UK; we are owners of the site We are not a registered charity or an official body. The information on this site is purely our own personal views and understanding of HUWE1 and should not be taken as medical information. We are not a medical provider or health care facility and can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individual medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder.

What is a privacy and cookie policy?

Your personal data, which may be held on paper or on a computer or other media, is subject to certain legal safeguards specified in the Data Protection Act and equivalent EU regulations.

This policy and any other documents referred to in it, sets out the basis on which we will process any personal data we collect from you or that is provided to us by yourself or other sources. This policy sets out rules on data protection and the legal conditions that must be satisfied when we obtain, handle, process, transfer and store personal data.

What types of information do we collect?

We only collect information necessary to understand usage of our site, to help us improve the site and to facilitate personal communication with us.


This type of information does not tell us who you are, but it does help us to

improve our services.

How do we collect this information?

When you visit and look around our website, we record things like your IP (internet protocol) address – the unique number of the device you are using to access our website, which pages you visit (on our website only), when they were visited, and the type of device you were using. This information helps us create a better experience for everyone who uses our website. Examples of the type of information that can be collected using your IP address include the type and version of your browser, and the location from which you are accessing our site. This helps us improve how our page templates appear and change content to make it relevant to our website visitors.


This means any information that may be used to identify you, such as your

name and email addresses.

How do we collect this information?

When you use our contact form we will obtain your email address for personal communications between you and the site owners at We will not use your personal details to add you to mailing lists.

Legal reasons for sharing information

We will only share personal information with third party companies, organisations or individuals if we strongly believe that access, use, storing or sharing of the information is reasonably necessary to:

• meet any relevant law, regulation, legal process or lawful governmental request

• put in force relevant terms of service, including investigation of potential violations

• detect, prevent or otherwise address fraud, security or technical issues

• protect against harm to the rights, property or safety of site owners, users of this site or the public, as required or permitted by law


Cookies are small text files stored on your device when you access most websites on the internet or open certain emails. Among other things, cookies allow a website to recognise your device and remember if you've been to the website before. We use the term cookie to refer to cookies and technologies that perform a similar function to cookies (eg tags, pixels, web beacons, etc). Cookies can be read by the originating website on each subsequent visit and by any other website that recognises the cookie.

We use these to improve our user’s experience of our website, temporarily store data and understand the parts of the website that users are visiting. We use cookies in order to make our website easier to use and, to support the provision of information and functionality to you.

Cookies are also used to help us gather statistics on the use of our website anonymously, as well as to provide us with information about how the website is used so that we can make sure it’s kept as up-to-date, relevant and error free as we can.

By using our website you agree to our use of cookies, including setting and reading cookies on your device. You can choose to restrict or block cookies through your browser settings at any time. For more information about how to do this, and about cookies in general, you can visit and

Whilst certain cookies may be set as soon as you visit a website, you can remove them using your browser settings - but this may impact the functionality or performance of the website.

Please note that third parties (including, for example, advertising networks and providers of external services like website analysis services) may also use cookies, over which we have no control, although we may receive services from these third parties (including, for example, for targeted advertising purposes and website analytics).

Links to third party websites

This website may contain links to other sites that are in no way controlled by us. Please be aware when you click on any such links we are not responsible for the privacy practices and/or policies of any website other than our own. We suggest you review the privacy policy of any website you visit, whether or not they are linked to by our site.

Do you have any questions?

If you have any questions or want to find out more, please email:

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