Privacy Statement

AFRICAN CARIBBEAN LEUKAEMIA TRUST (“ACLT”) PRIVACY NOTICE

1.   INTRODUCTION

ACLT would not be able to do any of our lifesaving work without our dedicated supporters.  Whether you have joined the stem cell, blood and organ donor registers, provided financial donation, shared our campaigns and patient appeals, volunteered your time or championed our work in anyway, we are very grateful to you. With your help we can continue with our lifesaving work to try to ensure no life is lost due to a matched donor not being available, and provide support to patients and their families living with blood cancer and other illnesses where an unrelated donor is required.

This Privacy Notice provides you with details of how we collect and process your personal data through your use of our site www.aclt.org

By providing us with your data, you warrant to us that you are over 16 years of age.

The African Caribbean Leukaemia Trust is the Data Controller and we are responsible for your personal data (referred to as “we”, “us” or “our” in this Privacy Notice).

Contact Details

If you have any questions about this Privacy Notice and how we use your information you can contact us by writing to us at:

ACLT
2a Garnet Road
Thornton Heath
Surrey
CR7 8RD

It is very important that the information we hold about you is accurate and up to date. Please let us know if at any time your personal information changes by sending an email to info@aclt.org with the subject heading: UPDATE MY DETAILS.

2.  WHAT TYPES OF PERSONAL DATA WE COLLECT

  • name
  • address
  • email
  • phone number
  • ethnicity
  • financial details
  • health data (where you have specifically requested our assistance)
  • information from credit reference, fraud prevention
  • user data to manage our website properly

3.  HOW WE COLLECT YOUR PERSONAL DATA

We collect information about you in a variety of ways such as directly when you:

  • contact us to apply for a job or volunteering opportunity;
  • complete a form at a donor registration drive, an awareness event, or via our website at www.aclt.org
  • make a financial donation;
  • subscribe to our mailing list;
  • request our support or share your story with us;
  • enter an ACLT Fun run, competition, prize draw, promotion, survey, etc.
  • give us feedback;

We may obtain your personal data indirectly from third parties and public sources including:

  • Charities Aid Foundation (CAF), NatWest
  • leading online fundraising platforms such as JustGiving, Virgin Money and MyBTDonate.

Please review their respective Privacy Notices to see how they process your information.

4.  HOW WE USE YOUR PERSONAL DATA AND THE LEGAL GROUNDS FOR PROCESSING

Personal data means any information capable of identifying an individual. It does not include anonymised data.

Based on your consent we would:

  • processing your financial donations or transactions;
  • informing you of news about ACLT patient appeals, campaigns, events and other ways that you can support our lifesaving work;
  • providing support to you for fundraising events or activities that you have signed up to do.

As necessary to comply with a legal obligation:

  • to verify your identity, make credit, fraud prevention and anti-money laundering checks;
  • for compliance with legal and regulatory requirements;
  • for the purpose of obtaining legal advice and issue or defence of legal rights;
  • for the prevention, detection and investigation of crime;
  • for Gift Aid, accounting or tax purposes.

As necessary to perform our contract with you:

  • to work with
  • volunteer for us
  • manage and update our records

As necessary for our own legitimate interests to pursue our charitable purpose to deliver our mission and vision  e.g.:

  • maintaining and administering our contact/supporter database and systems;
  • responding to your queries or complaints;
  • inviting you to participate in voluntary surveys, research, campaigns, patient appeals, volunteering
  • raising vital funds for our work by encouraging you to fundraise
  • managing our ongoing relationship with our supporters and everyone we work with
  • managing our financial transactions and prevent fraud

In all cases, we balance our legitimate interests against your rights as an individual and make sure we only use personal information in a way or for a purpose that you would reasonably expect in accordance with this Privacy Notice and that does not intrude on your privacy or previously expressed marketing preferences.

Sensitive Data

With your consent, we collect and process details of your ethnicity and in some instances, health records which is necessary for the provision of health care or treatment.  The lawful basis of processing is our legitimate interest to grow the number of African Caribbean, Asian and ethnic minority members on the stem cell, organ and blood donor registers which is in the vital interests of those seeking a donor to enhance or save their lives, and in the interest of public health.

ACLT also collect and process sensitive personal data about your ethnicity, health and tissue type on behalf of the following Data Controllers:

NHS Blood and Transplant: please click here to see their privacy notice
Anthony Nolan: please click here to see their privacy notice and
DKMS: please click here to see their privacy notice

We will only use your personal data for a purpose it was collected for or a reasonably compatible purpose if necessary. For more information on this please email us at info@aclt.org . We will never use your details for an unrelated new purpose, without requesting your explicit consent beforehand.

We may process your personal data without your knowledge or consent where this is required or permitted by law.
We do not carry out automated decision making or any type of automated profiling.

5.  DISCLOSURES OF YOUR PERSONAL DATA

We may share your personal data with the parties set out below:

  • Service providers who provide IT and system administration services;
  • Professional advisers including lawyers, bankers, auditors and insurers;
  • The Charity Commissioner, Companies House, Funding Regulator and the Information Commissioner who regulate us and may require us to report our processing activities
  • United Kingdom news media with your consent should you wish to share your story if you are a patient in need or if you are a potential lifesaving donor
  • Fraud and Crime prevention agencies
  • Our partners: Anthony Nolan, NHS Blood and Transplant and DKMS

We require all third parties to whom we transfer your data to respect the security of your personal data, keep it confidential and to treat it in accordance with the law. We only allow such third parties to process your personal data for specified purposes and in accordance with our instructions.

We will never share your information with third parties for their own purposes, unless this is explained to you at the time we collect your information, you give us your permission to, or we are legally required to do so. For example, we are legally required to provide your data to HMRC if you have agreed to us claiming Gift Aid on your behalf.

6.  INTERNATIONAL TRANSFERS

Countries outside of the European Economic Area (EEA) do not always offer the same levels of protection to your personal data, so European law has prohibited transfers of personal data outside of the EEA unless the transfer meets certain criteria.

  • Where we use certain service providers who are based outside the EEA, we may use specific contracts or codes of conduct or certification mechanisms approved by the European Commission which give personal data the same protection it has in Europe; or
  • If we use US-based providers that are part of EU-US Privacy Shield, we may transfer data to them, as they have equivalent safeguards in place.

If none of the above safeguards is available, we may request your explicit consent to the specific transfer. You will have the right to withdraw this consent at any time.

7.  DATA RETENTION

We will only retain your personal data for as long as necessary to fulfil the purposes we collected it for, including for the purposes of satisfying any legal, accounting, or reporting requirements. For tax purposes, we keep most of our records for 6 years.

8.  YOUR LEGAL RIGHTS

Under Data Protection laws you have the following rights although some do not always apply.

  • be informed about or processing of your personal data
  • the right to have your personal data corrected if it is inaccurate and to have incomplete personal data completed
  • the right to object to processing of your personal data
  • the right to restrict processing of your personal data
  • the right to have your personal data erased
  • the right to request access to your personal data and information about how we process it
  • the right to move , copy or transfer your personal data and
  • rights in relation to automated decision making including profiling

Right to withdraw consent – Where you have previously consented to processing of your personal data you may withdraw consent at any time providing there is no other lawful basis for the processing.

You can see more about these rights at:

https://ico.org.uk/for-organisations/guide-to-the-general-data-protection-regulation-gdpr/individual-rights

If you wish to exercise any of the rights set out above, please email us at info@aclt.org.

You will not have to pay a fee to access your personal data (or to exercise any of the other rights). However, we may charge a reasonable fee if your request is manifestly unfounded, repetitive or excessive or refuse to comply with your request in these circumstances.

We may need to request specific information from you to help us confirm your identity and ensure your right to access your personal data (or to exercise any of your other rights). This is a security measure to ensure that personal data is not disclosed to any person who has no right to receive it. We may also contact you to ask you for further information in relation to your request to speed up our response.

We try to respond to all legitimate requests within one month. Occasionally it may take us longer than a month if your request is particularly complex or you have made a number of requests. In this case, we will notify you.

If you are not happy with any aspect of how we collect and use your data, you have the right to complain to the Information Commissioner’s Office (ICO), the UK supervisory authority for data protection issues (www.ico.org.uk). We should be grateful if you would contact us first if you do have a complaint so that we can try to resolve it for you.

9. THIRD-PARTY LINKS

This website may include links to third-party websites, plug-ins and applications. Clicking on those links or enabling those connections may allow third parties to collect or share data about you. We do not control these third-party websites and are not responsible for their privacy statements. When you leave our website, we encourage you to read the privacy notice of every website you visit.

10. COOKIES

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