Introduction
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.
The Huntington’s Disease Association is subject to the UK General Data Protection Regulation (UK GDPR) and the Data Protection Act 2018. We are registered with the Information Commissioners Office as a Data Controller (registration number: ZA233740).
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 your right to control this data.
Scope
This policy applies to anyone whose personal data is processed by the Huntington’s Disease Association.
How 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, use our services, sign up to our mailing list, send or receive an email, make a donation to us, ask a question or otherwise provide us with personal information.
Third parties
Your information may be shared with us by third parties, for example where there is a contract in place between the Huntington’s Disease Association and a third party or where you have agreed for the third party to do so. These might include fundraising sites like Just Giving and Enthuse or independent event organisers like the London Marathon.
Referrals can also be made to us from other organisations or individuals, such as your GP, if they think you would benefit from the Huntington’s Disease Association’s support services.
Information available publicly
On occasion, we might obtain information from open websites such Companies House, from annual reviews, from company websites and from publicly available articles in newspapers and online news sites.
When you use 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.
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 and Google Signals. Google Signals enables cross-device tracking and reporting, integrated with Google Analytics. Google Analytics collects and reports 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. Many websites and apps use Google Analytics to understand how visitors engage with their sites or apps. If you don’t want Analytics to be used, you can install a browser add-on. Click here to find out more.
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. Turning cookies off may cause a loss of functionality when using our website.
You can also use the private or anonymous browsing function of your preferred browser (e.g. Chrome, Safari, Firefox, Microsoft Edge) which will allow you to browse the web without recording web pages and files in your browser or Account history (unless you choose to sign in). Cookies are deleted after you’ve closed all of your ‘private’ windows and tabs, and your bookmarks and settings are stored until you delete them.
If you have a user account for your preferred browser, you may be able to access, update or delete your activity.
EU user consent policy
By agreeing to cookies, you consent to your data being used for personalised and non-personalised advertising. You can opt-out at any time by following the steps above.
When you use social media
When you follow and interact with us on social media channels, such as Facebook, X, TikTok and Instagram, we may obtain information about you, for example when you tag us in photos, donate to us or comment on our posts. The information we receive is dependent on the privacy settings and preferences you have in place for the relevant platforms. If you follow us and interact with us on social media, we encourage you to read the privacy policy of the relevant social media platform.
In the same way as on our website, we collect and use your personal information using cookies, including social media / third-party cookies. This helps us to improve your user experience and provide you with personalised content.
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, we collect sensitive personal data when you speak to us or email us. Our advisers 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 who need to as part of their role at the charity.
To better support you, 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 permission for them to do so. They will respect your privacy and only share information as needed and will not act against your wishes unless they are required to do so by law or there are safety concerns for yourself or others.
We have an online message board, accessible from our website, for peer support, sharing best practice and seeking guidance from others who understand your situation. You will be asked for an email address when registering and our moderators may contact you for administrative purposes or where relevant. Users of this forum are given the option to use a pseudonym to allow them to post sensitive information anonymously.
We provide welfare grants to people affected by Huntington’s who apply for financial support through this scheme. We collect information about the person and their financial position for the purposes of processing grant applications.
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 branches and support groups are bound by the Huntington’s Disease Association data protection policy.
We also ask people to evaluate our services and use anonymised comments for our continuous improvement of services and to demonstrate our impact in charity communications.
If you work or volunteer for us, or apply to do so, we collect personal details from you such as name, address, qualifications and employment/ volunteer history as part of the recruitment process to determine your suitability for the role. We also verify your I.D, right to work in the UK and your driving status where this is relevant to the position. National insurance number and bank details are also collected where a salary is paid. Where relevant, we collect information from the Disclosure and Barring Service (DBS) and details of training undertaken as needed to ensure the safety of those we support.
Supporters
If you support us, for example, give us a donation, volunteer, register to fundraise, sign up for an event, sign up to our mailing list 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 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 or shop order
- Provide you with information on our services and products
- Support your fundraising
- Communicate with you and support you in your volunteer role
- Send you communications which you have requested such as regular eNewsletters
- Administer gift aid
- Ensure we know your contact preferences
- Learn more about how we can improve our services and products for you
- Monitor website traffic and learn more about who uses our site and what it is used for
Data about children
Our support extends to children living in Huntington’s 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, volunteers and supporters choose to share their experience of Huntington’s with us to help us in our work. These stories and / or photographs 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 Huntington’s disease families to ensure the Huntington’s 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.
Communications
Fundraising and marketing
Email, phone and SMS - If you have given us your consent, we will use these communication methods to 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. 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 info@hda.org.uk. We do not sell or share personal details to any third parties.
Post - We may send you communications by post about marketing and fundraising that we think you may be interested in based on your previous interaction with us, unless you have told us that you don’t want to hear from us by post. The legal basis for doing this according to UK GDPR is legitimate interest. As with email, phone and SMS communications, you have the right to opt out or change your preferences at any time by phoning us on 0151 331 5444, emailing us at info@hda.org.uk or writing to us at Huntington’s Disease Association, Liverpool Science Park, 131 Mount Pleasant, Liverpool, L3 5TF. We may use the services of third party mailing houses for postal communication purposes. Where such third party providers are utilised there will be a contract in place ensuring that your data is used for this specific and limited purpose, is securely stored and destroyed once the mailing is complete.
Using our services
We may send you communications without your consent where this relates to an administrative process to acknowledge an event booking, purchase, donation or membership application and provide you with relevant updates and reminders.
Online advertising
We use online advertising through google and social media sites like Facebook and Instagram to promote the work of the charity, our fundraising opportunities and the services we provide. This could be through advertising directly on particular websites or to people on social media sites based on what the respective platforms already know about them and their interests. This may involve the use of custom, saved and / or matched audiences and tracking interactions using cookies.
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. All staff and volunteers at the Huntington’s Disease Association are bound by policies, procedures and agreements relating to Data Protection and Confidentiality.
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. The Huntington’s Disease Association’s webpages are secure, evidenced by the lock icon that appears in the web browser next to the website address.
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 management policy.
We want to assure you that we do not sell donor details with other charities or other third parties.
The charity has contracts in place with third party processors for specific and limited purposes such as data cleansing or fundraising. Where you have donated to the Huntington’s Disease Association, your details may be shared with third party gift aid processors in order to maximize funds for the charity. Contracts are in place with all such third parties to ensure your data is kept safe and used for this purpose only.
We may also disclose personal data when obliged to do so by law, or if the disclosure is 'necessary' for purposes of national security, taxation and criminal investigation, or if we have your consent.
GDPR lawful basis of processing
There are six lawful basis for processing information according to General Data Protection regulation. The following five are most relevant to the Huntington’s Disease Association:
- That we have direct consent from you, such as when you sign up to our mailing list
- That there is a contract in place with you, such as when you become a member or you sign up to our lottery
- That we have a legal obligation to do so, such as when we are ordered by the Police, the Charity Commission, the Fundraising Regulator or other relevant authorities.
- That there is a vital interest to protect someone’s life, such as a medical emergency or a serious safeguarding issue.
- That there is a legitimate interest to do so that is fair and does not impact your rights,such as sending you information about events, services, products and activities that may be of interest to you by post or monitoring interaction with and opinion of the charity to better improve our services.
We have a series of privacy notices, in addition to this policy, for the following areas to explain further the different basis for processing personal information and how this is carried out safely including:
- Specialist Huntington’s Disease Advisory Service
- Supporters (fundraising, donations, shop purchases)
- Membership
- Recruitment
- Staff
- Volunteers
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 National change of address database.
We have a legal responsibility to ensure data accuracy; therefore we may share your information with contracted third parties, such as data cleansing providers, for the specific and limited purposes of data quality checks and updates using publicly available information. Where such third party providers are utilised, there will be a contract in place ensuring that your data is used for this specific and limited purpose, is securely stored and destroyed once the data cleanse is complete.
How long do we keep your information
We keep your information for only as long as is necessary to enable us to carry out relevant activity and comply with regulation. Retention periods for all data we hold are detailed in our data retention and destruction schedule which is reviewed annually and information destruction processes implemented where relevant. Please contact us if you would like to find out how long your data is kept.
Your rights
It is your information so you have the right to find out what information we hold about you (right of access), correct any errors or omissions (right to rectification), object to us using your data in a particular way (right of objection), or request deletion of your data (right of erasure). We will always comply with these requests as far as we can, subject relevant exceptions.
If you would like to make any of the above changes or access your information, please contact is on 0151 331 5444, info@hda.org.uk or Huntington’s Disease Association, Liverpool Science Park, IC1 131 Mount Pleasant, Liverpool L3 5TF.
Policy review
This policy was last updated in February 2024. It is due to be reviewed in February 2026.
Membership privacy statement
Introduction
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 the UK 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 info@hda.org.uk 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 the UK 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 info@hda.org.uk 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, info@hda.org.uk, writing to us Huntington’s Disease Association, 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 and third parties. We ensure that any external contractors or third parties 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 may disclose personal data when obliged to do so 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 info@hda.org.uk, or write to us at Huntington’s Disease Association, 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 www.ico.org.uk or call 0303 123 1113.
Supporters privacy statement
Introduction
The Huntington’s Disease Association takes the privacy of our supporters 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 the UK 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 supporters 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 never sell information provided to us by our supporters to third parties. 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 info@hda.org.uk or 0151 331 5444 or by writing to us at Huntington’s Disease Association, Liverpool Science Park, 131 Mount Pleasant, Liverpool, L3 5TF.
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 UK General Data Protection Regulation, the lawful reasons we use to process your information if you support the Huntington’s Disease Association is ‘legitimate interest’ and ‘consent’.
Legitimate interest
We process your personal information because there is a legitimate interest for both the Huntington’s Disease Association and you to fulfil a task such as making a donation, completing a shop order and fundraising.
We may also send you communications by post about marketing and fundraising that we think you may be interested in based on your previous interaction with us, unless you have told us that you don’t want to hear from us in this way. You can opt out or change your preferences at any time by phoning us on 0151 331 5444, emailing us at info@hda.org.uk or writing to us at Huntington’s Disease Association, Liverpool Science Park, 131 Mount Pleasant, Liverpool, L3 5TF.
Consent
We process your personal information for future communications from the Huntington’s Disease Association where you have given us your communication preferences and permission to do so, for example to keep you up to date with events, keep you informed of successes and campaigns, provide you with information about our services and fundraising opportunities.
How we collect information
We will only collect information from you that is necessary for undertaking the task for which you contacted us about, for future monitoring and evaluation purposes and to send you information about other fundraising activities we think you may be interested in based on your interaction with us, unless you have previously opted out of such communications. 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 enquire about our activities, register with us, make a donation to us, ask a question about our services or otherwise provide us with personal information.
Other organisations and third parties
We may also receive information indirectly from third party organisations, for example from fundraising sites like Just Giving or Enthuse. These third parties will only share information with us if you have indicated you wish to support us and have given your consent.
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, 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
- Photographs of fundraising activities (where you have given us written consent to use them)
- If you are organising an event, information about the event.
We will use this information to do the following as relevant:
- Process your donation
- Provide you with information on our services and products
- Support your fundraising and/or event, and encourage others to fundraise
- Administer gift aid
- Ensure we know your contact preferences
- 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 where you have given us consent to communicate with you in this way.*
- Send you communications by post about marketing and fundraising that we think you may be interested in based on your previous interaction with us, unless you have told us that you don’t want to hear from us by post.*
- Learn more about how we can improve our services and products for you
- 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.
*You can opt out at any time or change your preferences by contacting us on 0151 331 5444, info@hda.org.uk, by writing to us at Huntington’s Disease Association, 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 or third party providers who may collect or process data on our behalf, for example sometimes we run an event in partnership with a third party and in order to administer the event we will need to share the information with them.
We ensure that any external contractors or third party data processors 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 may disclose personal data when obliged to do so 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. This also applies to information processed by third party providers on our behalf.
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 info@hda.org.uk, or write to us at Huntington’s Disease Association, 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 www.ico.org.uk or call 0303 123 1113.
Advisory service privacy statement
Introduction
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 the UK 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 info@hda.org.uk 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 UK 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 to provide you with relevant support and advice, 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
Our Advisory service provides advice to people affected by Huntington’s disease and those involved in their care and support. Our support extends to children living in Huntington’s families and to those that have the juvenile form of the disease themselves (JHD).
To help us deliver the Advisory Service, our Adviser and Youth teams may collect sensitive data when they speak to you and they collect this information to provide support, guidance and advice to you.
For those children engaged with our Youth Service 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.
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 picture of the prevalence and impact of Huntington's disease.
How we keep your personal information safe
We make sure that your information is accessed only by appropriately trained staff and approved contractors and third parties. We ensure that any external contractors and third parties 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 info@hda.org.uk, or write to us at Huntington’s Disease Association, 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 www.ico.org.uk or call 0303 123 1113.
Recruitment privacy statement
Introduction
The Huntington’s Disease Association takes the privacy of prospective employees 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 the UK 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 recruitment 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 during the application process. Most importantly this statement outlines your rights regarding the use of your personal information.
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 info@hda.org.uk 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 the UK General Data Protection Regulation, the lawful reasons we use to process your information are ‘legitimate interest’ and ‘legal obligation’ and in cases of successful applicants to enter into a ‘contract’ with you.
This means that we are processing your personal information because there is a legitimate interest to do so to consider your application for employment and where relevant to offer you an employment contract with the Huntington’s Disease Association. We are also required to collect certain information about you to comply with our legal obligations.
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, when you apply for a role at the Huntington’s Disease Association.
Other organisations and third parties
We may obtain information about your from third party organisations such as Disclosure and Barring Service or from people you name as referees if you are offered a role at the charity.
What information do we collect and hold
‘Table A’ below details the information we collect and store up to and including the shortlisting and interview stages of the recruitment process, how and why we do so, how we use it and with whom it may be shared.
‘Table B’ details the additional information we collect before making a final decision to recruit, i.e. before making an unconditional offer of employment, how and why we do so, how we use it and with whom it may be shared.
We ensure that information collection and processing is always proportionate.
Table A – Up to and including the shortlisting and interview stages
The information we collect
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How we collect the information
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Why we collect the information
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How we use and may share the information
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Your name and contact details (i.e. address, telephone numbers, email address)
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From you in your application form / CV / Covering letter and interview notes (if relevant)
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Legitimate interest – to carry out a fair recruitment process
Legitimate interest – to progress your application, arrange interviews and inform you of the outcome at all stages
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To enable us to contact you to progress your application, arrange interviews and inform you of the outcome.
Applications are anonymised by those with HR responsibilities for shortlisting by the panel to help prevent unconscious bias. Full applications are shared with the interview panel at the interview stage
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Details of your qualifications, experience, employment history (including job titles, salary and working hours) and interests
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From you, in your application form / CV / cover letter and interview notes (if relevant)
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Legitimate interest – to carry out a fair recruitment process
Legitimate interest – to make an informed decision to shortlist for interview and to recruit where relevant
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To make an informed recruitment decision
Access to this information is restricted to those who are involved in the recruitment process.
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Your racial or ethnic origin, gender and sexual orientation, religious or similar beliefs
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From you, in a completed equal opportunities monitoring form. The completion of this monitoring form is voluntary.
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To comply with our legal obligations for equality of opportunity and treatment
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To comply with our equal opportunities monitoring obligations and to follow our equal opportunities, diversity and inclusion policy. The information is not sent to the recruiting panel and has no part in the shortlisting process. The information supplied is anonymous, is kept confidentially and is not stored with any identifying information.
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Information regarding whether you have a criminal record
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From you, in your application form / CV / cover letter and interview notes (if relevant)
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To comply with our legal obligations
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To make an informed and safe recruitment decision.
To carry out statutory checks as required.
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Details of your referees
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From you, in your application form / CV / cover letter and interview notes (if relevant)
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Legitimate interest – to carry out a fair recruitment process
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To carry out a fair recruitment process.
To comply with legal / regulatory obligations
Access to this information is restricted to those with HR responsibilities at the charity, the interview panel and line manager if different and the referee.
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Table B – Before making a final decision to recruit
The information we collect
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How we collect the information
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Why we collect the information
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How we use and may share the information
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Information about your previous academic and/or employment history, including details of any conduct, grievance, performance or attendance issues.
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From your referees (details of whom you will have provided on your CV/ Cover letter or safer recruitment form
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Legitimate interest – to make an informed decision to recruit
Legitimate interest – to maintain employment records
To comply with legal, regulatory and corporate governance obligations and good employment practice
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To obtain the relevant reference about you
To comply with legal / regulatory obligations
Access to this information is restricted to those with HR responsibilities at the charity, the interview panel and line manager if different and the referee.
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Information regarding your academic and professional qualifications
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From you within your application form, CV or on production of evidence via certificates
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Legitimate interest – to verify the qualification information provided by you
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To make an informed recruitment decision
Access to this information is restricted to those with HR responsibilities at the charity, the interview panel and line manager if different
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Information regarding your criminal record
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From you if disclosed in your cover letter, CV or safer recruitment form
From the Disclosure and Barring Service (DBS)
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To perform the employment contract
To comply with our legal obligations
Legitimate interest – to verify the criminal records information provided to you
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To make an informed recruitment decision
To carry out statutory checks
Access to this information is restricted to those with HR responsibilities at the charity, the interview panel and line manager if different and DBS.
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I.D documents
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From you as part of the DBS application process
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To comply with our legal obligations
Legitimate interest – to verify the criminal records information provided to you
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To make an informed recruitment decision
To carry out statutory checks
Access to this information is restricted to those with HR responsibilities at the charity, the interview panel and line manager if different and DBS
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Your right to work in the UK
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From you, and where necessary, from the Home Office
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To enter into / perform the employment contract
To comply with our legal obligations
Legitimate interest – to maintain employment records
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To carry out right to work checks
Access to this information is restricted to those with HR responsibilities at the charity, the interview panel and line manager if different and may be shared with the Home Office.
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A copy of your driving license, where this is relevant to the role
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From you
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To enter into / perform the employment contract
To comply with our legal obligations
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To make an informed recruitment decision
To ensure you have a clean driving license
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Information about potential conflicts of interest or any other information relevant to the recruitment and employment processes
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From you via a Safer Recruitment form
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To enter into / perform the employment contract
To comply with our legal obligations
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To make an informed recruitment decision
To safeguard the charity’s continuing function and reputation.
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How we keep your personal information safe
Information about you will be held electronically at our central office in a shared folder with access restricted through password protection or encryption to those involved in the recruitment process. It will also be held in our Human Resources database with access restricted to HR personnel.
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 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.
How long do we keep your information
We keep the personal information that we obtain about you during the recruitment process for no longer than is necessary for the purposes for which it is processed. How long we keep your information will depend on whether your application is successful and you become employed by us, the nature of the information concerned and the purposes for which it is processed.
We will keep recruitment information (including interview notes) on unsuccessful job applicants for no longer than one year taking into account the limitation periods for potential claims such as race or sex discrimination (as extended to take account of early conciliation), after which they will be destroyed. If there is a clear business reason for keeping recruitment records for longer than the recruitment period, we may do so but will first consider whether the records can be pseudonymised, and the longer period for which they will be kept.
If your application is successful, we will keep only the recruitment information that is necessary in relation to your employment.
Retention periods for all recruitment data we hold are detailed in our data retention and destruction schedule which is reviewed annually and 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 info@hda.org.uk, or write to us at Huntington’s Disease Association, Liverpool Science Park, IC1, 131 Mount Pleasant, Liverpool, L3 5TF.
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 www.ico.org.uk or call 0303 123 1113.
Employees and contractors privacy statment
Introduction
The Huntington’s Disease Association takes the privacy of our contractors and employees 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 the UK 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 employee and contractor 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 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 info@hda.org.uk 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 the UK General Data Protection Regulation, the lawful reasons we use to process your information if you are employed or contracted by the Huntington’s Disease Association is ‘contract’.
We process your personal information to fulfil the obligations of the contract of employment or service provision agreement in place with you as an employee or contractor working for the Huntington’s Disease Association.
How we collect information
We will only collect information from you that is necessary for your role or the services you provide to the charity 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, during the recruitment and selection process and during the time you work for the Huntington’s Disease Association.
Other organisations and third parties
We may obtain information about your from third party organisations such as Disclosure and Barring Service or from people you name as referees for your role.
What information do we collect and hold
As an employer, the Huntington’s Disease Association collects and holds information about its employees and contractors for employment purposes such as management and administration. This may include:
- Name
- Date of birth
- Email address
- Postal address
- Telephone number
- National insurance number
- D document copies
- Bank or building society details
- Payroll and pension information
- Next of kin name and contact details
- Qualifications
- Medical history and sickness absence history
- Employment history and details of previous employment
- References
- Performance and disciplinary records
- Criminal records history
- Period of employment / contract
- Declared conflicts of interest and loyalty
- Records of complaints
- Health and safety records (including accident reports, medical conditions)
- Photograph (for staff profile, website and I.D badge)
- Location (Personal safety devices and mobile phones used by staff have location tracking available used in emergency situations for health and safety purposes and to track lost devices)
- Information needed for equal opportunities monitoring
- Contract of employment / service level agreement
- Correspondence with you e.g. letters about your role / services you provide
We will use this information to do the following as relevant:
- To fulfil our responsibilities to you under your contract of employment / service level agreement
- To comply with legal requirements, such as the health and safety at work legislation
- To pursue our legitimate business interests
- To perform our rights and obligations related to your role
- To contact your emergency contact, where necessary and appropriate
The Huntington’s Disease Association may wish to publish information about you for other purposes, such as on our website for marketing purposes. In these cases where this is not already covered within your obligations under your contract of employment, we will only do so with your consent.
How we keep your personal information safe
We make sure that your information is accessed only by appropriately trained staff and approved contractors and third parties. We ensure that any external contractors or third parties 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 financial information is 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 may disclose personal data when obliged to do so 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.
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 info@hda.org.uk, or write to us at Huntington’s Disease Association, 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 www.ico.org.uk or call 0303 123 1113.
Volunteers privacy statement
Introduction
The Huntington’s Disease Association takes the privacy of our 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 Huntington’s Disease Association is subject to the UK 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 volunteer 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 volunteer or 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 info@hda.org.uk 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 volunteer for the Huntington’s Disease Association is ‘legitimate interest.’
Legitimate interest
We process your personal information because there is a legitimate interest for both the Huntington’s Disease Association and you to fulfil your volunteer role.
Contract
For some volunteer roles, such as membership of HD Voice, the charity’s Patient and Public Involvement group, we process your information because there is a contract in place between you and the Huntington’s Disease Association in relation to your role.
How we collect information
We will only collect information from you that is necessary for your volunteer role 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, during the recruitment and selection process and during the time you volunteer at the Huntington’s Disease Association.
Other organisations and third parties
We may obtain information about your from third party organisations such as Disclosure and Barring Service or from people you name as referees for your volunteer role.
What information do we collect and hold
The personal information we collect and how we will use it is dependent on your volunteer role and the reason you gave us the information to begin with. We may collect the following information to identify you on our systems, record your volunteer interests and responsibilities and to contact you about volunteer opportunities and key charity updates that are relevant to your role.
- Name
- Date of birth
- Email address
- Postal address
- Telephone number
- Volunteer role details / interests
- Terms of office / volunteer period
- DBS details and / or declarations relating to criminal convictions, bankruptcy, vulnerable adult or child barring list information etc that determine volunteer eligibility
- Declared conflicts of interest and loyalty
- Reference information
- Your emergency contacts
- Photograph (where relevant, e.g. Board of Trustees profiles feature on our website)
- Health information where relevant to the volunteer role e.g. if you are attending an event where a health matter should be declared for health and safety reasons
- Details of your qualifications
- Your application information
- Records of complaints
- Information needed for equal opportunities monitoring (we will always ensure that the data is anonymised and kept confidential)
- Your volunteer data protection and confidentiality agreement (where relevant)
- Your branch or support group declaration where relevant
- Your HD voice contract / agreement (where relevant)
- Details of your bank account (for payment of expenses)
- Correspondence with you e.g. letters about your role
We will use this information to do the following as relevant:
- To fulfil our responsibilities to you as a volunteer for the Huntington’s Disease Association
- To comply with legal requirements, such as the health and safety at work legislation
- To pursue our legitimate business interests
- To perform our rights and obligations related to your volunteering role
- To contact your emergency contact, where necessary and appropriate
- To create a volunteer profile with your interests and preferences so that we only contact you in the most appropriate way and with the most relevant information.
How we keep your personal information safe
We make sure that your information is accessed only by appropriately trained staff, volunteers and approved contractors and third parties. We ensure that any external contractors and third parties 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 may disclose personal data when obliged to do so 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.
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 info@hda.org.uk, or write to us at Huntington’s Disease Association, 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 www.ico.org.uk or call 0303 123 1113.
Branch and support groups privacy statement
Introduction
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 the UK 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 branches and support groups privacy statement explains what personal information our branches and support groups will hold about you, how they collect it, how they will store it, how they will use it and how they 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, either directly and/or through our branches and support groups.
Our branch and support group network is volunteer-led and provides peer support on a local level, giving attendees opportunity to meet others affected by Huntington’s, share stories and advice, meet socially and get involved in fundraising.
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 info@hda.org.uk or 0151 331 5444.
Data protection principles
The Huntington’s Disease Association and our branches and support groups comply 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 processing your information
In accordance with UK General Data Protection Regulation, the lawful reasons we use to process your information if you are engaged with our branches and support groups are ‘legitimate interest’ and ‘consent’.
Legitimate Interest
We process your personal information because there is a legitimate interest to do so to provide peer support.
Consent
We process your personal information for future communications from the Huntington’s Disease Association branch or support group that you are engaged with where you have given us your communication preferences and permission to do so, for example to keep you up to date with local events and meetings, provide you with information about the charity and about fundraising opportunities.
How we collect information
We will only collect information from or about you that is necessary to provide you with relevant support, information and advice, 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 attend a branch or support group meeting 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. Where relevant to your support, you may be encouraged to speak with your local Specialist Huntington’s Disease Adviser or Youth Worker, who may refer you into the wider charity advisory service, where specialist knowledge around Huntington’s is required. We may share information with the Huntington’s Disease Association Advisory service or other members of Huntington’s Disease Association staff if we feel that a greater level of support is needed.
If referred to the advisory service by branch or support group volunteers, advisory service staff may, with your permission, 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
Our branches and support groups provide peer support at a local level to people affected by Huntington’s disease and those involved in their care and support. Our support extends to children living in Huntington’s families and to those that have the juvenile form of the disease themselves (JHD).
During the course of branch and support group meetings, attendees may choose to share sensitive personal information about themselves and their circumstances for the purposes of peer support. Any such information is shared in strict confidence and is not recorded in writing or by any other means.
Some branches offer welfare grants for people in their local area affected by Huntington’s who require financial support. Applicants for this support may be required or may choose to share sensitive personal and financial information as a part of the application process.
Branches and support groups may engage in fundraising activities (either for the branch or for the wider charity). If a person donates to one of these activities, 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
- Photographs of fundraising activities (where you have given us written consent to use them)
We will use this information to do the following as relevant:
- Process your donation
- Provide you with information about branch and support group activities and events
- Support your fundraising and encourage others to fundraise
- Administer gift aid
- Ensure we know your contact and mailing preferences
- Tell you about the progress the Huntington’s Disease Association is making or tell you about ways you can support us and or get involved where you have given us consent to communicate with you in this way. If you want to opt out of communications you can do so at any time by contacting your local branch or support group.
- Send you communications by post about upcoming events, opportunities and fundraising that we think you may be interested in, unless you have told us that you don’t want to hear from us by post.
- Learn more about how we can improve our services for you.
How we keep your personal information safe
Your information is accessed only by branch and support group leads, and in certain circumstances by charity staff (for example when branches and support groups send information for archiving). We ensure that any external contractors and third parties we use (for example fundraising platforms or payment processing platforms) 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.
It is required that branches and support groups have relevant controls and permissions in place on any websites and social media channels that they administer.
Data protection training is provided for all branches and support groups, and is mandatory for branch and support group leads.
Branches and support groups take appropriate measures to ensure that any personal information you disclose is kept secure, accurate and up to date. Appropriate security measures are in place to prevent personal information from being accidentally lost, used or accessed in an unauthorised way. Access to your personal information is limited 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.
Branch and support group leads will only disclose your personal information where they have your permission or when they 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
Branches and support groups ensure that your personal information is kept only for so long as is necessary and for the purposes for which it was collected.
Accessing your information
You have the right to find out what information branches, support groups and the Huntington’s Disease Association 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 is held 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 info@hda.org.uk, or write to us at Huntington’s Disease Association, 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 www.ico.org.uk or call 0303 123 1113.