Privacy policy


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

The information we collect 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.

In line with new general data protection regulation (GDPR) May 2018, we will be moving to be an ‘opt-in’ communication process. This means that we will only send communications to you if you have specifically stated that you are happy for us to do using your preferred communication channel e.g. 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.

This policy outlines exactly how we collect personal information, exactly what we collect, how we use it and how we store it. It also makes clear your right to know what we know about you and how you can make changes to your communication preferences.

To complement this policy document, the Huntington's Disease Association have also produced a series of privacy notices, available below, for the following areas to reflect the different basis for processing your personal information:

  • Specialist HD Advisory Service
  • Supporters (fundraising, donations, shop purchases)
  • Membership
  • Recruitment

How do we collect information?

Directly from you

We obtain personal information when you give it to us directly, for example when you enquire about our activities, register with us, send or receive an email, make a donation to us, ask a question about our services or otherwise provide us with personal information.

Third parties

We could collect information about you from a friend who wants to tell you about our website or the assistance we may be able to provide or the fundraising activities we carry out.

We may also receive information indirectly from third party organisations, for example from fundraising sites like Just Giving or Virgin Money giving. These third parties will only share information with us if you have indicated you wish to support us and have given your consent.

Information available publicly

On occasion, we might obtain information from open websites such Companies House and from publicly available articles in newspapers and online news sites.

When you use our website

To help make improvements to our website and ensure we provide the best service for users, we will often gather general information about usage via Google Analytics. Google Analytics collect and report information on how our website's used, such as which pages people visit most often and which services, events or facilities are of most interest, helping us improve your experience. We may also determine which pages users visit when they click on links in Huntington's Disease Association emails. Wherever possible we use aggregated or anonymous information which does not identify individual visitors to our website.

Our website uses ‘cookies’ to remember you so that the next time you visit, your experience is more streamlined. For example, if you are returning to buy another product in our shop your name and address might automatically appear in the text fields or we might be able to tailor the information you see based on your previous visit to the site and the information that interested you.

Cookies are a common feature used by over 90% of websites. They aim to make your interaction with the website faster and easier. If you would prefer to, you can disable cookies altogether. Guidance on how to do this can be found here

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 our advisory service, our advisers collect sensitive personal data about your health when you speak or email. They will use this to provide support, advice and guidance to you. This information is managed separately from other data provided to the charity and is accessed only by those involved in your care.

To better understand your situation, our advisers, on occasion will discuss what they know about you with other health and care professionals. They will only discuss matters concerning your health and care needs and will only share information if you have provided written permission for them to do so. They will respect your privacy and only share information as needed and will not normally act against your wishes.

Our online message board will ask you for an email address when registering and our moderators may contact you about administrative changes to the form. Users of this forum are given the option to use a pseudonym which allows them to post sensitive information anonymously.

Our, volunteer led, Branches and Support groups collect information about their members in order to keep them informed about Huntington’s Disease Association activities. Our branches also collect information when an individual applies for a welfare grant from the branch funds. All Huntington’s Disease Association are bound by the Huntington’s Disease Association Data Protection Policy.

We do also ask people to evaluate our services and use anonymised comments for our continuous improvement of services and charity communications.


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 may also collect sensitive personal information such as information about your health if this is required for the purpose you have contacted us e.g. if you take on a fundraising challenge event.

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

  • 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

Data about children

Our support extends to children living in HD families and to those that have the juvenile form of the disease themselves (JHD). We are also often supported by children who take part in fundraising activities for us.

For those children engaged in support we collect the same sensitive information about their health and support needs as we would for any adults we support. We will obtain the consent of parents or guardians before collecting and sharing personal information about a child and work to the same stringent information sharing guidelines for both adults and children.

For our young supporters, we collect the same basic personal data including name, date of birth, address, a parent or guardian’s email address and a parent or guardian’s credit / debit details.

Sharing your story and knowledge

A number of families choose to share their experience of Huntington’s with us to help us in our work. These stories are often featured in case studies in our charity print and online communications. This could include sensitive information relating to their health and family. We will only share this information if we have received full written consent from the family or individual involved.

We rely on experiences and knowledge of HD families to ensure the HD community has an input into the work of our charity and to the wider work and research relating to the disease. We have a patient public involvement group, called HD Voice, who contribute from a family perspective to help inform research and the direction of various charity initiatives.

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.

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 opt out or change your preferences with any mail out sent. If you don’t want to hear from us, we ask you to let us know either by phoning us on 0151 331 5444 or emailing us at [email protected]

We do not sell or share personal details to any third parties.

Understanding our supporters

We may analyse the personal information you give us to create a profile of your interests and preferences so that we only contact you in the most appropriate way and with the most relevant information. This allows us to understand more about you and helps us tailor our requests to you.

We may, if appropriate, ask supporters who may be able and willing to give more to us than they already do to help advance our service.

We may need to share your information with our service providers, associated organisations and agents for the purposes described above.

How we keep your data 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 information governance policy.

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

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.

Keeping your information up to date

We need you to let us know when your details change. We may on occasion, use information available publicly, such as the Post Office’s Nation change of address database.

Your rights

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

You also have the right to request a copy of any information we hold about you. If you want to access your information, please send a written request detailing what you would like to see to our Head Office address, for the attention of Data Protection Lead at Huntington’s Disease Association, Suite 24, Liverpool Science Park, IC1 131 Mount Pleasant, Liverpool L3 5TF

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

Policy changes

The terms of this policy may change, so please check it from time to time.


Privacy notices