Privacy notice - members


The Huntington’s Disease Association (HDA) takes the privacy of our beneficiaries, supporters, members and volunteers very seriously. 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 who uses and supports our charity, taking your needs and interests into account to make more informed decisions and ultimately help make life better for those affected by Huntington’s disease.

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

The HDA will not share your personal information with third parties and other organisations unless you give us prior agreement to do so.

Most importantly this notice 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 HDA.

So what has changed?

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

In line with GDPR we are moving to ‘opt-in’ communications whereby we will only send communications to you if you have specifically stated that you are happy for us to do so using your preferred communication channel i.e. email, telephone or post. We want to share information about our services and news about our successes and campaigns with you so we really want you to opt-in.

Amongst those key changes under GDPR we will no longer be 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 know what we know about you and make changes to how we communicate with you in the future.

Legal basis for using your information

Amongst those key changes under GDPR we will no longer be able to collect and store your personal information unless we have identified a legal basis for processing your personal information.
We collect and process your personal information for the following reasons:

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 means that we are processing your personal information because it is necessary to complete the application stage towards membership of the Association.

CONSENT: We process your personal information for future communications from the HDA where you have agreed, given us your communication preferences and permission to do so for example to keep you up to date with events, keep you formed of successes and campaigns, provide you with information about our services and fundraising opportunities.

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. This information that you have given us shall only be used for the purposes that were agreed when you provided us with the information. 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 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 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.

If you support us, for example, give us a donation, volunteer, 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.

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

  • Send you magazine, newsletter and or other communications by post or email
  • Send you other information in relation to Huntington’s disease
  • 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

Direct marketing

If you have given us your consent, we will tell you about the progress our charity is making and from time to time we may ask you for donations or tell you about other ways you can support us and or get involved.

We want to assure you that we do not sell or share donor details with charities or other third parties.

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 contract 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 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 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.

Access to your information and contacting us

It is your information so you have the right to ask us to stop contacting you or 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 [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 Commissioner’s Office. For further information, please visit the Information Commissioner’s website: or call 0303 123 1113