General: 07876 682589    |   Fundraising: 07876 682589   |   Support: 0800 046 9832  

How we use your information
This privacy policy (together with our Terms and Conditions and any other documents referred to in them) set out the basis on which we collect personal data from our website.  We need to provide this information to make sure you know how we process any information collected by us and it is in accordance with the Data Protection Act 1998 and ICO (Information Commissioners Office) guidance.

The information we collect applies to:
•    Visitors to our website

Visitors to our website
When a user visits  we collect standard internet log information and details of visitor patterns.  We do this to find out things such as the number of visitors to different parts of our website and this tells us the information that is useful.

We do not collect information that identifies anyone.  We do not make any attempt to find out information on who is visiting our website.  We do not collect personal information through our website.

The cookies used by Batten Disease Family Association
Cookies are small electronic files that are placed on your computer when you visit a website.  They are often needed to ensure that the website works efficiently.
Please find below the cookies that we use and why:

Essential Cookies
Cookies are used within the website to ensure that the website works as it should.  The website will not work properly if these are not used. These include login cookies allowing access to the content management system.

Non Essential Cookies
Google Analytics (_utma, _utmb, _utmc, _utmz)
These cookies are used to collect information about how our visitors use our website.  We use this information to see what visitors have found particular pages of use and how long they stayed on our website. This information is viewed in an anonymous format and also provides information on where our visitors come from.

You can opt out of Cookies
You can refuse the use of cookies on this website by opting out of their through the box on the home page or through the opt out link.
Alternatively you can refuse the use of cookies by activating the setting on your browser which allows you to refuse the setting of cookies.  You can also delete cookies by clearing your browsing history (this will depend on your browser).
Websites which are linked to us may also be using cookies.  If you have any concerns you should contact the third party website for more information.

People who request information on our services
BDFA may hold the details of the visitors who request information on the work that we do.  These details may be used to contact these people at a later date.
Any information or statistics relating to our business that we disclose to others shall not identify any visitors personally. We may, for example, perform statistical analyses of the behaviour of the users of our website in order to measure interest in the various areas of our website.
In the event that we sell or buy any business or assets, we may disclose your personal data to the prospective seller or buyer of such business or assets.
If BDFA or its assets are acquired by a third party, personal data held by it about its customers, will be one of the transferred assets.

Where do we store your information
BDFA store all information lawfully and in accordance with the protection Act 1998 in the UK and the Data Protection Act 1988. The data that we collect and process is stored on servers held within the UK.
Unfortunately the transmission of information via the internet is not completely secure.  We will do our very best to protect your personal data, however we cannot ensure the security of your data transmitted to our site.  Any transmission is at your own risk.

Your right to access personal information
You have the right, on request, to receive a copy of the personal information that we hold about you.  You have the right on request:
– to be told for what purpose personal data about you is being processed
– to be given a description of the data and the recipients to whom it may be disclosed
– to have communicated in an intelligible form the personal data concerned and any information available as to the source of the data
There will be a nominal fee of £10 for administration fees.
Any questions about this privacy policy can be sent to

Your Responsibility
You must check and ensure that all information, content, material or data you provide on this website is correct, complete, accurate and not misleading and that you disclose all relevant facts.
We may also need to collect information from you about other individuals.  As explained in our Terms of Use, by submitting another person’s details you are confirming to us that you have their permission to do so and that they understand how their details will be used.
In order to change your details or opt out of marketing emails and future communications you must make sure you call BDFA on 01252 416110.

Changes to the Privacy Policy
In the future, we may need to alter or amend this Privacy Policy. All changes will be posted on this page on this website. This Privacy Policy was last updated August 2012.

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All donations help us to provide the best support we can to families affected by Batten Disease.


Thank you for your support.