Privacy statement - Specialist Huntington's disease advisory service


The Huntington’s Disease Association takes the privacy of our beneficiaries very seriously. We are committed to protecting and keeping any personal data you share with us, or we get from other organisations, safe.

The Huntington’s Disease Association is subject to General Data Protection Regulation and the Data Protection Act 2018. We are registered with the Information Commissioners Office as a Data Controller (registration number: ZA233740).

This advisory service privacy statement explains what personal information we will hold about you, how we collect it, how we will store it, how we will use it and how we may share information about you to provide the most appropriate support and help. Most importantly, this statement outlines 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.

Please ensure that you read this privacy notice and any other similar notice we may provide to you and contact us if you have any questions about the data we collect and hold about you on [email protected] or 0151 331 5444.

Data protection principles

The Huntington’s Disease Association complies fully with the data protection principles when gathering and using personal information, these principles are set out within our Data Protection Policy.

Legal basis for using your information

In accordance with General Data Protection Regulation, the lawful reason we use to process your information if you use our advisory service is ‘legitimate interest’.

This means that we are processing your personal information because there is a legitimate interest to do so to provide specialist advice, support and information to you following your contact with us.

How do we collect information

We will only collect information from or about 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 and 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 do we collect and hold

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

Developing the charity's services
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.

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 charity’s objectives in improving the lives of all those affected by Huntington's.

We may 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. All of our online forms are protected by encryption.

We take appropriate measures to ensure that any personal information you disclose to us is kept secure, accurate and up to date. We have appropriate security measures in place to prevent personal information from being accidentally lost, used or accessed in an unauthorised way. We limit access to your personal information to those who have a genuine business need to know it. Those processing your information will do so only in an authorised manner and are subject to a duty of confidentiality.

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.


How long do we keep your information

We ensure that your personal information is kept only for so long as is necessary and for the purposes for which it was collected.

Retention periods for all data we hold are detailed in our data retention and destruction schedule which is reviewed annually and secure information destruction processes implemented where relevant.

Accessing your information

You have the right to find out what information we hold about you, how this information is used and how long your data is kept. You also have a right to request a copy of the information that we hold about you. If you would like further information or you would like a copy of the information we hold, please contact us via telephone on 0151 331 5444, by email [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.

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