Action Duchenne Ltd privacy notice
This privacy notice tells you what to expect us to do with your personal information.
- Contact details
- What information we collect, use, and why
- Lawful bases and data protection rights
- Where we get personal information from
- How long we keep information
- Who we share information with
- Sharing information outside the UK
- How to complain
Contact details
Post
Simpson Wreford Llp, Wellesley House, Duke Of Wellington Avenue, LONDON, , SE18 6SS, GB
Telephone
07944 268187
info@actionduchenne.org
What information we collect, use, and why
We collect or use the following information to provide services and goods, including delivery and third party referrals:
- Names and contact details
- Addresses
- Health information (including medical conditions, test results, allergies, medical requirements and medical history)
- Information about care needs (including disabilities, home conditions, dietary requirements and general care provisions)
- Information about work, home and living conditions
- Information about support requirements
- Information about lifestyle, interests or personal history
- Records of meetings and decisions
- Website user information (including user journeys and cookie tracking)
- Information relating to compliments or complaints
We also collect or use the following special category information to provide services and goods, including delivery and third party referrals. This information is subject to additional protection due to its sensitive nature:
- Genetic information
- Health information
We collect or use the following information to receive donations or funding and organise fundraising activities:
- Names and contact details
- Addresses
- Donation history
- Tax payer information (for Gift Aid purposes)
- Gifts in wills
- Visitors to our stores and website
We collect or use the following personal information for service updates or marketing purposes:
- Names and contact details
- Addresses
- Marketing preferences
- Recorded images, such as photos or videos
- Call recordings
- Donation history
- Website and app user journey information
- Records of consent, where appropriate
We collect or use the following personal information to comply with legal requirements:
- Name
- Contact information
- Identification documents
- Financial transaction information
- Any other personal information required to comply with legal obligations
- Health and safety information
- Safeguarding information
- Criminal offence data
We collect or use the following personal information for recruitment purposes:
- Contact details (eg name, address, telephone number or personal email address)
- Date of birth
- National Insurance number
- Copies of passports or other photo ID
- Employment history (eg job application, employment references or secondary employment)
- Education history (eg qualifications)
- Right to work information
- Details of any criminal convictions (eg Disclosure Barring Service (DBS), Access NI or Disclosure Scotland checks )
We also collect or use the following special category information for recruitment purposes. This information is subject to additional protection due to its sensitive nature:
- Racial or ethnic origin
- Religious or philosophical beliefs
- Health information
- Sexual orientation information
We collect or use the following personal information for dealing with queries, complaints or claims:
- Names and contact details
- Address
- Account information
- Purchase or service history
- Correspondence
We also collect or use the following special category information for dealing with queries, complaints or claims. This information is subject to additional protection due to its sensitive nature:
Lawful bases and data protection rights
Under UK data protection law, we must have a “lawful basis” for collecting and using your personal information. There is a list of possible lawful bases in the UK GDPR. You can find out more about lawful bases on the ICO’s website.
Which lawful basis we rely on may affect your data protection rights which are set out in brief below. You can find out more about your data protection rights and the exemptions which may apply on the ICO’s website:
- Your right of access – You have the right to ask us for copies of your personal information. You can request other information such as details about where we get personal information from and who we share personal information with. There are some exemptions which means you may not receive all the information you ask for. Read more about the right of access.
- Your right to rectification – You have the right to ask us to correct or delete personal information you think is inaccurate or incomplete. Read more about the right to rectification.
- Your right to erasure – You have the right to ask us to delete your personal information. Read more about the right to erasure.
- Your right to restriction of processing – You have the right to ask us to limit how we can use your personal information. Read more about the right to restriction of processing.
- Your right to object to processing – You have the right to object to the processing of your personal data. Read more about the right to object to processing.
- Your right to data portability – You have the right to ask that we transfer the personal information you gave us to another organisation, or to you. Read more about the right to data portability.
- Your right to withdraw consent – When we use consent as our lawful basis you have the right to withdraw your consent at any time. Read more about the right to withdraw consent.
If you make a request, we must respond to you without undue delay and in any event within one month.
To make a data protection rights request, please contact us using the contact details at the top of this privacy notice.
Our lawful bases for the collection and use of your data
Our lawful bases for collecting or using personal information to provide services and goods, including delivery and third party referrals are:
- Consent – we have permission from you after we gave you all the relevant information. All of your data protection rights may apply, except the right to object. To be clear, you do have the right to withdraw your consent at any time.
- Legitimate interests – we’re collecting or using your information because it benefits you, our organisation or someone else, without causing an undue risk of harm to anyone. All of your data protection rights may apply, except the right to portability. Our legitimate interests are:
- By understanding the needs of those we are here to support, they can then receive more bespoke support.
For more information on our use of legitimate interests as a lawful basis you can contact us using the contact details set out above.
Our lawful bases for collecting or using personal information to receive donations or funding and organise fundraising activities are:
- Consent – we have permission from you after we gave you all the relevant information. All of your data protection rights may apply, except the right to object. To be clear, you do have the right to withdraw your consent at any time.
- Legal obligation – we have to collect or use your information so we can comply with the law. All of your data protection rights may apply, except the right to erasure, the right to object and the right to data portability.
Our lawful bases for collecting or using personal information for service updates or marketing purposes are:
- Consent – we have permission from you after we gave you all the relevant information. All of your data protection rights may apply, except the right to object. To be clear, you do have the right to withdraw your consent at any time.
Our lawful bases for collecting or using personal information to comply with legal requirements are:
- Legal obligation – we have to collect or use your information so we can comply with the law. All of your data protection rights may apply, except the right to erasure, the right to object and the right to data portability.
Our lawful bases for collecting or using personal information for recruitment purposes are:
- Consent – we have permission from you after we gave you all the relevant information. All of your data protection rights may apply, except the right to object. To be clear, you do have the right to withdraw your consent at any time.
Our lawful bases for collecting or using personal information for dealing with queries, complaints or claims are:
- Consent – we have permission from you after we gave you all the relevant information. All of your data protection rights may apply, except the right to object. To be clear, you do have the right to withdraw your consent at any time.
Where we get personal information from
- Directly from you
- Family members or carers
How long we keep information
We keep personal information for the duration of your relationship with Action Duchenne, whether through the Support team, Fundraising team, or another contact. We will keep data for 7 years after this relationship has ended to ensure any gift aid or queries which arise can be answered with a full understanding of the relationship.
If you would prefer us to delete any personal information we hold on you, please contact info@actionduchenne.org with this specific request.
Who we share information with
Data processors
Blackbaud
This data processor does the following activities for us: They provide us with a CRM platform.
KCS
This data processor does the following activities for us: They manage our IT systems.
Mailchimp
This data processor does the following activities for us: They provide us with our email marketing platform.
Alcumus
This data processor does the following activities for us: They host our HR systems.
Others we share personal information with
- Organisations we need to share information with for safeguarding reasons
- Professional advisors
- Relevant regulatory authorities
- Publicly on our website, social media or other marketing and information media
Sharing information outside the UK
Where necessary, our data processors may share personal information outside of the UK. When doing so, they comply with the UK GDPR, making sure appropriate safeguards are in place.
For further information or to obtain a copy of the appropriate safeguard for any of the transfers below, please contact us using the contact information provided above.
Organisation name: Mailchimp
Category of recipient: Email marketing platform
Country the personal information is sent to: US
How the transfer complies with UK data protection law: The country or sector has been assessed as providing adequate protection to data subjects (also known as Adequacy Regulations or UK data bridge)
How to complain
If you have any concerns about our use of your personal data, you can make a complaint to us using the contact details at the top of this privacy notice.
If you remain unhappy with how we’ve used your data after raising a complaint with us, you can also complain to the ICO.
The ICO’s address:
Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
Helpline number: 0303 123 1113
Website: https://www.ico.org.uk/make-a-complaint
