Privacy statement - members


The Huntington’s Disease Association takes the privacy of our members very seriously. We are committed to protecting and keeping any personal data you share with us 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 members privacy statement explains what personal information we will hold about you, how we collect it, how we will store it and how we will use it. We will not share your personal information with third parties and other organisations unless you give us prior agreement to do so. Most importantly, this statement will make clear to you 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 reasons we use to process your information if you are a member of the Huntington’s Disease Association is a ‘contract’.

 We process your personal information to fulfil the obligations of the contract in you becoming a member of the Huntington’s Disease Association. This involves communication with you about your membership, your right to vote on important charity matters and to keep you updated about the work of the charity, our events, services, campaigns and fundraising opportunities. You have the right to change your preferences or ask us to stop contacting you at any time by contacting us on [email protected] or 0151 331 5444.

How 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 apply to become a member of the Huntington’s Disease Association, when you make a donation or when you enquire about an activity.

What information do we collect and hold

The personal information we collect and how we will use it is dependent on why you gave it to us in the first instance. If you support us for example, you give us a donation, volunteer, become a member, register to fundraise, sign up for an event or buy something from our shop, we may collect the following:

  • Name
  • Date of birth
  • Email address
  • Postal address
  • Telephone number
  • Credit/debit card details (When you make a donation or purchase, your card information is not held by us, it is collected by our third-party payment processors, to ensure the secure online capture and processing of transactions.)
  • Information about whether you are a UK taxpayer for gift aid claim purposes

 We will use this information to do the following as relevant:

  • Process your member application
  • Contact you about your membership, membership opportunities and your right to vote at the Annual General Meeting
  • Send you communications about the work of the charity, marketing, fundraising and opportunities for involvement that we think you may be interested in as a member of the Huntington’s Disease Association, unless you have told us that you don’t want to hear from us in this way*
  • Process your donation
  • Provide you with information on our services and products
  • Support your fundraising
  • Administer gift aid
  • Ensure we know your contact preferences
  • Learn more about how we can improve our services and products for you

*You can opt out at any time or change your preferences by contacting us on 0151 331 5444, [email protected], writing to us Huntington’s Disease Association, Suite 24, Liverpool Science Park, 131 Mount Pleasant, Liverpool, L3 5TF or clicking on an opt-out / preference change link in any marketing email we send you.

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 also use a secure server so that when you make a donation or payment via our website, your details are protected. 

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 data when obliged to disclose personal data by law, or the disclosure is 'necessary' for purposes of national security, taxation and criminal investigation, or if we have your consent.


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.


Access to your information and contacting us

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.