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HBA Support Data Policy

This privacy notice tells you what to expect us to do with your personal information.

Our contact details

Email: Support@hbasupport.org

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What information we collect, use, and why
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We collect or use the following information to provide services and goods, including delivery:

  • Names and contact details

  • Addresses

  • Website user information (including user journeys and cookie tracking)

  • Records of meetings and decisions

  • Information relating to sponsorship

 

We also collect or use the following information to provide support services:

  • Health information

 

Special category or sensitive information

Some health information that you may tell us falls under what is deemed as sensitive information, such as your genetic data or health information. As with all the personal information you provide us, you can be assured that any sensitive information you choose to supply will be kept confidential and only shared with your consent. 

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Confidentiality

In exceptional circumstances we may need to break confidentiality and share information without your consent.

Circumstances where we may be required to break confidentiality:

  • A child, young person or adult is at risk of harm

  • An adult is at risk of immediate and significant harm either to themselves or others

  • We are required to share information as ordered by the courts

 

We will always attempt to keep you informed of any action we take if a decision is made to break confidentiality.

 

We collect or use the following information for service updates or marketing purposes:

  • Names and contact details

  • Marketing preferences

  • Website and app user journey information

  • Information relating to sponsorship

  • Records of consent, where appropriate

 

We collect or use the following information for research or archiving purposes:

  • Names and contact details

 

We collect or use the following information to comply with legal requirements:

  • Identification documents

 

We collect or use the following information for recruitment purposes:

  • Contact details (eg name, address, telephone number or personal email address)

 
Lawful bases
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Our lawful bases for collecting or using personal information to provide services and goods are:

  • Consent

  • Contract

 

Our lawful bases for collecting or using personal information for service updates or marketing purposes are:

  • Consent

 

Our lawful bases for collecting or using personal information for research or archiving purposes are:

  • Consent

 

Our lawful bases for collecting or using personal information for legal requirements are:

  • Legal obligation

 

Our lawful bases for collecting or using personal information for recruitment purposes are:

  • Consent

 
Where we get personal information from
  • People directly

 
How long we keep information

You can view our retention schedule here

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Who we share information with
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Data processors
  • Wix and Mailchimp

This data processor does the following activities for us: Holds database of names and facilitates enewsletter mailout. Data access is via password protected access.

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Other organisations
  • Organisations we’re legally obliged to share personal information with

 
Sharing information outside the UK

Where necessary, our data processors may store personal information outside of the UK. When doing so, they comply with the UK GDPR, making sure appropriate safeguards are in place. Please contact us for more information.

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Your data protection rights

Under data protection law, you have rights including:

  • Your right of access - You have the right to ask us for copies of your personal data.

  • Your right to rectification - You have the right to ask us to rectify personal data you think is inaccurate. You also have the right to ask us to complete information you think is incomplete.

  • Your right to erasure - You have the right to ask us to erase your personal data in certain circumstances.

  • Your right to restriction of processing - You have the right to ask us to restrict the processing of your personal data in certain circumstances.

  • Your right to object to processing - You have the right to object to the processing of your personal data in certain circumstances.

  • Your right to data portability - You have the right to ask that we transfer the personal data you gave us to another organisation, or to you, in certain circumstances.

  • Your right to withdraw consent – When we use consent as our lawful basis you have the right to withdraw your consent.

 

You don’t usually need to pay a fee to exercise your rights. If you make a request, we have one calendar month to respond to you.

 

To make a data protection rights request, please contact us using the contact details at the top of this privacy notice.

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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.

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If you remain unhappy with how we’ve used your data after raising a complaint with us, you can also complain to the ICO.

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The ICO’s address:           

Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF

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Helpline number: 0303 123 1113

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Website: https://www.ico.org.uk/make-a-complaint

Contact us by email - support@hbasupport.org

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Hereditary Brain Aneurysm Support (HBA Support) is a charity registered in England and Wales. Registered Charity Number 1210213

Our registered address is HBA Support, The Old Police Station, South Street, Ashby de la Zouch, Leicestershire, LE65 1BR

 

Hereditary Brain Aneurysm Support provides information and support for individuals and families affected by brain aneurysms with a proven or suspected hereditary link. We also aim to raise awareness and help people understand brain aneurysms better.

For site issues, please email support@hbasupport.org

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