Privacy notice - Specialist HD advisory service


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

The information we collect from you allows us to learn more about your needs and experiences and take these into account to make more informed decisions on the most appropriate support and help that you require to make life better for you and others affected by Huntington’s disease.

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

Most importantly it will make clear your rights regarding the use of your personal information and what to do if you no longer wish to be contacted by the Huntington's Disease Association.

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 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 information.
GDPR also gives you increased rights to know 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 information is LEGITIMATE INTEREST.

This means that we are processing your personal information because there is a legitimate interest for the HDA to process your information to provide specialist advice, support and information to you based on the reason that you contacted the HDA.

Whenever we process your personal information under the legitimate interests’ lawful basis we make sure that we take into account your rights and interests.

How do we collect information?

We will only collect information from you that is necessary for undertaking the task for which you contacted us about and for future monitoring and evaluation purposes. Where information is stored for monitoring and evaluation purposes we will ensure that it is anonymised at the earliest possible stage in accordance with our data protection policies.

If in the future, we would like to use your 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 contact the advisory service for advice and support or to enquire about our services or otherwise provide us with your personal information.

Other organisations & third parties
The Huntington's Disease Association is committed to helping and supporting you and all those affected by Huntington's and an important element of caring and supporting you is working with other professionals. Other organisations and third parties may contact us to refer you into our service and discuss your care where specialist knowledge around Huntington’s is required.

The Huntington's Disease Association, with your permission, may refer you into other services and work with them jointly to support you.

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 those affected by Huntington’s disease
To help us deliver the Advisory Service, our Specialist HD Advisers may collect sensitive data about your health when they speak to you and they collect this information to provide support, guidance and advice to you.

Support for developing the services provided by the Huntington's Disease Association
We use the information that you provide to us to help inform how we should deliver services in the future through looking at the nature of your enquiries with the Huntington's Disease Association and identifying how this can be resourced and delivered effectively in the future.

Support for monitoring and evaluation
The Huntington's Disease Association will use the information that you provide to us to regularly review the services we deliver and ensure that these services are being delivered to the highest standard and are contributing to the charities objectives in improving the lives of all those affected by Huntington's.

We will also anonymously use the personal information that you provide us with to help in increasing awareness about Huntington's and promoting the work undertaken to improve the lives of all those affected by Huntington's through informing national projects and creating a national picture of the frequency of Huntington's.

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 your personal details.

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 so long as is necessary and for the purposes for which it was collected. 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, 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 and storing 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 [email protected] 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 sent and correct and update your personal information.

If you have any questions or concerns, you can phone us on 0151 331 5444 or email us at [email protected]

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 Commissioner's website or call 0303 123 1113.