The Huntington’s Disease Association (HDA) takes your privacy very seriously and are committed to keeping the personal information you share with us protected and stored safely.

We collect the minimum information from you to enable you to complete registration and become a member of the Message Board. The personal information that you provide is not used for any other purposes than the completion of the registration process.

This document outlines exactly how we collect your personal information, what we will do with it, how we will use it and how we will store it.

Most importantly this notice will make clear your rights regarding the use of your personal information and what to do if you no longer wish your personal information to be held by the HDA.

So what has changed?

The 25 May 2018 marked the biggest change in data protection legislation in more than twenty years when the General Data Protection Regulation (GDPR) came into force. Much has changed since the Data Protection Act and the GDPR will give greater protection to your personal information in what is an increasingly digital world.

Amongst those key changes under the GDPR is that we are no longer able to collect and store your personal information unless we have identified a legal basis for processing your personal information.

GDPR also gives you increased rights to ask what we know about you and make changes to how we communicate with you in the future.

Legal basis for using your information

From 25 May 2018 the lawful reason we use to process your personal data is CONSENT.

This means that we only process your personal information where you have agreed and given the HDA permission to process your information as part of the registration process towards becoming a member of the HDA Message Board.

How do we collect information?

We will only collect information from you that is necessary for the completion of the message board registration process. The information that you give us shall only be used for the purposes of completing the registration process for the message board. If in the future, we would like to use the information for another purpose, or the reason for using your personal information has changed we will ask your permission before doing so.

Directly from you

We obtain personal information when you give it to us directly, for example when you complete the message board registration process.

What information we collect and how we use it

The personal information we collect and how we will use it is dependent on why you gave it to us in the first instance.

Support for developing the services provided by the HDA

At the HDA we use the information that you share to help inform us how we should deliver services in the future through looking at the nature of the information in your posts and threads on the message board and using these to inform future decisions.

Support for monitoring and evaluation

The HDA will use the information that you provide us with to regularly review the services we provide and ensure these services are being delivered to the highest standard and are contributing to the charities objectives of improving the lives of all those affected by HD.

The HDA will also use the personal information that you provide us with to help in increasing awareness about HD and promoting the work undertaken to improve the lives of all those affected by HD.

How we keep your personal information safe

We make sure that your information is accessed only by appropriately trained staff and approved contractors. We ensure that any external contractors we use are comprehensively checked and adhere to a formal agreement in which our expectations and requirements regarding the way in which they manage, collect and access any personal data, are met.

We make sure that there are relevant controls in place on our website and on our data networks to safeguard those personal details that you provided us with as part of the process of registering for the Message Board.

We take appropriate measures to ensure that any personal information you disclose to us is kept secure, accurate and up to date. We ensure that your personal information is kept only for as long as you have given the HDA permission to store this information. Information is securely destroyed within the relevant timescales in accordance with our data protection policies.

We will only disclose your personal information where we have your permission or when we are obliged to disclose personal data by law, or the disclosure is ‘necessary’ for purposes of national security, safeguarding, or where there is a risk of harm to self or others, taxation and criminal investigation.

Access to your information and contacting us.

It is your information so you have the right to ask us to stop contacting you or to stop using your personal data.

You have the right to request a copy of the information that we hold about you. If you would like a copy please contact us on,uk or write to us at Huntington’s Disease Association, Suite 24, Liverpool Science Park, IC1, 131 Mount Pleasant, Liverpool L3 5TF.

We want to make sure your information is up to date, so please contact us to ask us to correct it if it needs updating.

We make it clear and easy for you to tell us how you want us to communicate with you. We include information about how to stop receiving communication from us, or change your communication preferences with any mail out.

If you have any questions or concerns, you can call us on 0151 331 5444 or email us at

Policy changes

Please note that the terms of this notice will be reviewed and updated and please visit our website for the latest privacy policy updates at:

If you are unhappy about how we handle your personal information you can contact the Information Commissioners Office. For further information, please visit the Information Commissioners website: or call 0303 123 1113