Direct Marketing Statement

Direct Marketing Statement

We respect privacy and your rights to control your personal data. We will be clear about the data we collect and why. Your data is protected by us. We do not and will not sell your data to third parties.

Cavernoma Alliance UK (CAUK) is a registered charity and a membership organisation (charity number 1114145). Our mission is to improve the quality of life for all those affected by cavernoma and create greater awareness of the condition.

CAUK has a Privacy Statement which explains the personal information we collect from you, either directly or indirectly, and how we will use it. The Statement also covers the choices you can make about the data we collect, and how you can control these decisions. It applies to all CAUK arrangements, products and activities as well as any CAUK controlled websites or offline interactions (CAUK Activities). Please read this Statement in conjunction with this Marketing Privacy Statement carefully to understand when you may provide personal information to us and how CAUK uses personal information provided.

This statement is different in that it sets out CAUKs approach to contacting its members for ‘marketing’ purposes. Direct marketing includes the promotion of aims and ideals as well as the sale of CAUK products and services.

The Privacy and Electronic Communications Regulations (PECR) prevents CAUK from contacting its members or the public for marketing purposes by electronic means (email) unless they have consented to being contacted for this purpose. The General Data Protection Regulation (GDPR) requires CAUK to obtain informed consent from the public/members to be able to directly market via email, opting in to receive this electronic communication. PECR and GDPR does not prevent CAUK from contacting its’ members or the public to ‘directly market’ if this communication is via post.

When a member joins CAUK, they will be asked if they are happy to be contacted via email or other electronic means (for example text messages) for marketing purposes. This may be to promote the sale of CAUK products or services. If a member does not opt in to receive this electronic communication, such marketing will still be undertaken by CAUK by post or in person at CAUK events.

There is no obligation on new or existing members to consent to this form of communication as part of their membership. However, allowing this contact will help to support CAUK as a charity that relies upon the support of its’ members and the public to continue its’ activities. If a member is happy to consent to this electronic communication, the consent obtained is therefore knowingly and freely given, clear and specific to this form of communication for the promotion of CAUK products or services.

You have the right to opt-out of receiving our marketing information.  You may exercise the right at any time by contacting us at info@cavernoma.org.uk.  If we send you any marketing emails we will always provide an unsubscribe option to allow you to opt-out of any further marketing emails. If you opt-out you will be added to our suppression list to ensure we do not accidentally send you further marketing information.

As stated above, CAUK is entitled to market directly to its members of the public through postal means. You can unsubscribe from this marketing also at any time. When unsubscribing from any postal marketing, you may initially still receive some content which has already been printed or sent, but we will always seek to ensure you are removed from future campaigns.  We may still need to contact you for administrative or operational reasons in accordance with our legitimate purposes as a charity, but we will make sure that those communications do not include direct marketing.

We never share your name or contact details with third parties for marketing purposes.  We may use third party service providers to send out our marketing material but we only allow them to use that information on our instructions and where they have agreed to treat the information confidentially and to comply with the data protection legislation.

Changes to Our Marketing Privacy Statement

CAUK may modify or update this Statement when necessary to reflect customer feedback and changes in our Activities so, please review it regularly. If there are material changes to the Statement or in how CAUK uses your personal data, we will notify you either by posting a notice of such changes before they take effect or by directly sending you a notification. We encourage you to regularly review this Statement to learn more how CAUK is using and protecting your information. Your continued use of CAUK Activities after any modification to this Statement will constitute your acceptance of such modification and updates.

How to Access, Control or Dispute Your Personal Information Held by CAUK

You can review, edit or delete your personal data in your CAUK account or CAUK app, or by contacting us directly to info@cavernoma.org.uk. You can also alter CAUK collection and use of your data by logging in to your CAUK membership profile on the website and editing your profile, communication and data usage preference.

If you would like to request a copy of your personal data that CAUK holds on you, please write to our data protection officer (details below) setting out what personal data you would like. Please note that CAUK can only provide you with personal data that they hold on you, not on another individual unless you have that individual express and signed consent to this sharing of personal data.

If you feel our records are inaccurate, you can write to us, asking for them to be amended. We will respond to any request to access or delete your personal data as soon as possible, but certainly within 30 days.

If you feel we have unfairly withheld information or unfairly refused to amend our records, you can make a complaint to our Chair of the Board of Trustees by emailing info@cavernoma.org.uk. Alternatively you can contact The Information Commissioners Office, email: Registration@ico.org.uk, or Telephone: 03030 123 1113.

How to Contact Us

If you have any questions about the use of your personal information, please send us an email to info@cavernoma.org.uk. CAUK’s Data Protection Office is Tabitha Kassem and can be contacted on: tabithak@cavernoma.org.uk or 07960 703 754.

Unless otherwise stated, CAUK is a data controller for personal data we collect through the Activities subject to this Statement. Our registered office is Suite 4, Somerleigh Gate, Somerleigh Road, Dorchester, Dorset, DT1 1TL.

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