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Privacy Policy

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.

This Privacy Statement (the ‘Statement’) 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 carefully to understand when you may provide personal information to us and how CAUK uses personal information provided.

By engaging in CAUK Activities you agree to the use of your personal information as described in this Statement. The terms ‘we’, ‘us’, or ‘CAUK’ refer to CAUK or any of its agents or contractors

Learning about CAUK

As you gather more information about CAUK, you may virtually or physically visit a site that we own. Examples include browsing our website, calling our registered office, or attending CAUK events. To learn more about CAUK Activities you may voluntarily provide personal information, such as your name and email address during these interactions. You may also provide information online via cookies or similar technologies when you visit our websites.

The lists of data given in this Statement are not exhaustive. We keep this information so we can carry out CAUK Activities. As a membership not-for-profit organisation, CAUK processes your personal information so as to meet your membership needs which is a legitimate expectation of CAUK in order for CAUK to carry out the CAUK Activities.

  • We collect: 
    name, email address, IP address, and information provided by cookies or similar technology.
  • Why: 
    We use this information to share news about events and products offered by CAUK. We may use the IP address to helps us to understand geographic information about our website visitors better so that we can improve our website for everyone.

Registering with CAUK

Once you engage in CAUK Activities, you will be asked to provide data so that we can set up your membership profile. You will be asked to provide information such as contact details, date of birth, diagnosis, gender, etc. as well as a password. CAUK will then establish a unique alpha-numeric identification number which we use to help identify your specific CAUK system in a less personal manner (membership number). Your membership profile is critical to our being able to support you through out CAUK Activities. You are able to login to your profile and change or update your details at any time.

  • We collect:
    your name, phone numbers, postal and email addresses, location data, age, health data, disability status, your relationship to a person with a cavernoma if this is not you, including data on affected child(ren) if you are the parent/guardian of a child with cavernoma, the locations and symptomatic of your cavernoma your password, your member’s story, how you heard about CAUK, your date of becoming a member, password hints and IP address.

    Please note, your password is stored using one-way hash, which means that it cannot be recovered (or disclosed) by anyone, including CAUK.
  • Why:
    We collect this information to provide you with support and to carry out the CAUK Activities. It also helps prevent unauthorised access to your membership profile. We use your email to send you CAUK related notifications such as CAUK newsletters and information on events taking place, information about CAUK Activities generally, and to share exciting CAUK news and product offerings.

Attending a CAUK Event

Once you have decided to attend or communicate with CAUK in relation to a CAUK event, you may be asked to provide information so that we can carry out our obligations to you as a ‘attendee’. This may be in relation to arranging your catering, access, or simply ensuring there is enough capacity for you to attend. Information may include things like your name, phone number, email, address, and payment information. It may also include sensitive personal information that we need to obtain to ensure we provide you the best event possible and meet our obligations in doing that, such as whether you have a disability which requires access to be adapted or health information.

  • We collect: 
    your name, date of birth, phone number (optional), email address, address, address, any disability information, health information, ethnicity information, payment information.
  • Why: 
    We use this information to complete our obligations to you as an event organiser. We use this information to follow up with you about your attendance, help with any access issues, and other issues related to your use of CAUK Activities.

Where we Store and Process Personal Data

We will store your details securely using filing cabinets kept in secure office accommodation or secure computer systems. Any records held electronically will be protected by appropriate security arrangements that prevent unauthorised access. Personal data collected by CAUK may be stored and processed in the United Kingdom, where we operate and are based, in the EU or in any other country where CAUK or its affiliates, subsidiaries or service providers maintain facilities in accordance with legislative requirements.

Our Retention of Personal Data

CAUK retains personal data for as long as necessary to provide CAUK Activities and fulfil the transactions you have requested, or for other essential purposes such as complying with our legal obligations, and resolving disputes and enforcing our agreements. As a member, we keep your personal data for up to 6 years after the end of your membership. There may be instances when we are required to keep your data for longer. When determining this, we take into account minimum retention requirements set out in law as well as our legitimate interest based on our business services. If you would like a copy of CAUKs Retention Policy, please contact CAUKs Data Protection Officer (details below).

Changes to our 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.

Security of Data

It is our policy to ensure:

  • Information is only given to our staff and agencies on a need to know basis.
  • Agencies with whom we share information observe our policies ensuring the protection and security of data.
  • All records are kept securely.
  • Personal information is treated as strictly confidential, unless you give consent or the law permits it.
  • If you would like to authorise someone to access your personal data and act on your behalf, please provide us with this request in writing providing a signed declaration or other identification so that we can ensure you are providing explicit consent and can verify who the request is coming from. If you wish to withdraw this permission you must notify us in writing.
  • If you telephone our offices to enquire about your any confidential data we hold on you, you will be asked security questions to confirm your identity.

If you have any questions about the security of your personal information, you can contact CAUKs Data Protection Officer (details below).

Our Policy towards Children

CAUK does not knowingly solicit personal information from children or send them requests for personal information unless required to do so as part of our legal obligations, for example when arranging an event. All Activities will be arranged through individuals with parental responsibility.

Although visitors of all ages may navigate through our website, we do not intentionally collect personal information from those under the age of sixteen. If, following a notification by a parent or guardian, or discovery by other means, a child under sixteen has been improperly registered on this site by using false information, we will cancel the child’s account and delete the child’s personal information from our records.

Getting Help from CAUK

From time to time, you may decide to contact us for assistance with CAUK Activities. To be able to offer you the best service possible, we may collect certain data from you to be able to respond to your requests.

  • We collect: 
    This may include contact information such as your name, email address, phone number, social media identifiers (if you contact us using a social media channel), and the content of your chats and other communications with CAUK.
  • Why: 
    We collect this information to give you the best and most efficient customer support possible.

Information obtained from third-party sources

We protect data obtained from third parties according to the practices described in this Statement and we also apply any additional restrictions imposed by the source of data.

How we use Personal Information

Our mission is to improve the quality of life for all those affected by cavernoma and create greater awareness of the condition. We require information about you to support you as a member of CAUK. We will collect varying amounts of personal information from you from the start of your relationship with us, and throughout your time as our member. CAUK uses the data we collect to provide you with the CAUK Activities we offer, which includes using data to improve and personalise your CAUK experience. We also use the data to communicate with you, for example, informing you about your membership profile, new Activities, products or services available, security and other types of updates.

We may use the data we hold or contact you to obtain more data to undertake research and analysis. Research may involve collecting further data, such as through surveys, interviews or focus groups. We may also analyse data we hold, such as data arising from attendance at events. Any research or analysis will only be undertaken so as to improve our services and meet our charitable objectives. When processing personal data for research, we adopt appropriate safeguards such as pseudonymisation (where data is not fully identifiable) and anonymization (where there is no possibility of identification of an individual).

CAUK uses the data for the following purposes:

  • Providing our membership Activities
  • Membership Support
  • CAUK Activity Improvement
  • Research to achieve the CAUK mission and objects
  • Security, Safety, and
  • Dispute Resolution
  • Business Operations
  • Communication, Marketing and Advertising of CAUK Activities

Communication, Marketing & Advertising

We use the data we collect to deliver and personalise our communications with you. For example, we may contact you by email or other means of electronic communication (including through the CAUK website) to inform you about new CAUK Activities, relevant support or services in your area, security or software updates, update you on a support issue, or invite you to take part in a survey. This communication may be via email and where it is, it will relate to our legitimate purpose as a not for profit, charitable organisation acting in accordance with its’ charitable aims. However, there may be instances where CAUKs contact with you could be interpreted as direct marketing which is contrary to the Privacy Electronic Communications Regulations (PECR) (for example where we may be seeking to sell our Christmas cards). The PECR prevents CAUK from contacting you for this type of activity by email; it can only e undertaken by post.

CAUK has a specific Marketing Privacy Statement setting out more information on marketing undertaken by CAUK through electronic communication, management of email subscriptions and promotional communications. Please visit our website or contact our registered office to read this statement (see below).

Sharing & Disclosure

CAUK does not and will not sell personal information about our members or visitors. 

We only disclose your data as authorised in this Statement. We may share information with the following types of third parties.

Who we may Disclose your Personal Information to and Why

  • Third Party Vendors. CAUK uses a variety of third party vendors to carry out services like website management and hosting, credit card processing and email communications. We only share your personal data as necessary. To complete a transaction, provide a product or service you have requested or authorised and only with vendors or agents working on our behalf for the purposes described in this Statement. In this case, your personal information will be shared with these agents or contractors but only for the purpose of performing services on behalf of CAUK and in accordance with this Statement. Information on relevant contractors and third party vendors we share your data with may be requested and will be provided as relevant to the enquiry and requestor making the request.
  • Other Parties such as:
    • Parties with whom it might be necessary, when we reasonably believe it to be required by law or in connection with legal proceedings; to prevent harm to CAUK or its customers; for the prevention and detection of crime or the apprehension or prosecution of offenders; to maintain the security of our Products or to protect the rights or property of CAUK.
    • Parties with whom it might be necessary to complete a financial or corporate transaction such as a merger or sale of assets.
  • We also share data with CAUK-controlled affiliates and subsidiaries.

We may also share non-personal information such as aggregated data with our partners or publicly. We may, for example, inform the Charities Commission about the number of members we have who have a registered disability or we may share the total number of members attending CAUK events.

Please note our Products include links to products or applications of third parties whose privacy practices may differ from CAUK. If you provide personal data to any of those third parties or their Products, your data is governed by their privacy statements.

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 our nominated Data Protection Officer 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

Alternatively you can contact The Information Commissioners Office, email:, or Telephone: 03030 123 1113

Your Communication, Marketing and Advertising Preferences

If you are being contacted by us and wish to stop receiving emails from us, provided this communication is not necessary for the purposes of our meeting our obligations towards you, you can do so by emailing your request to We respect your choice, and we will stop sending you emails once you unsubscribe. It may take up to one week to process your request. You can also make your choice by signing in with your CAUK account where you can update contact information and manage CAUK-wide contact preferences.

Please note, regardless of your communication settings, we will continue to communicate with you if we need to, to fulfill our legal obligations.

Cookies and Other Similar Technologies

We use cookies and similar technologies like pixels, tags, web beacons, and other identifiers to help us personalise our website for you, remember your preferences, understand how users are using our website or app, and help customise our marketing offerings. By visiting our website or using our app, you agree to the use of cookies and similar technologies for the purposes described in this Statement.


A ‘cookie’ is a small data file containing a string of characters that is sent to your computer when you visit a website. When you visit the website again, the cookie allows that site to recognise your browser.

The length of time a cookie will stay on your computer or mobile device depends on whether it is a “persistent” or “session” cookie. CAUK uses both types of cookies. Session cookies will only stay on your device until you stop browsing. Persistent cookies stay on your computer or mobile device until they expire or are deleted.

We use the following types of cookies on our website.

  • Strictly necessary cookies. These cookies are essential for you to browse our website and use its features. Without these cookies, services like shopping baskets cannot be provided.
  • Performance upped. These cookies collect information about how you use our websites. This data may be used to help optimise our website and make it easier for you to navigate.
  • Functional cookies. These cookies allow our websites to remember choices you make and personalise your experience. We may store your geographic location in a cookie for instance, to ensure that we show you the website relevant to your area.
  • Third Party cookies. Third party cookies are those placed by websites and/or parties other than CAUK. These cookies may be used on our website to improve our products or services or to help us provide more relevant advertising. These cookies are subject to the respective privacy policies for these external services, for example, the Facebook Data Use Policy.
  • Analytics cookies. We use analytics cookies, like those offered by Google Analytics, to help us understand things like how long a visitor stays on our website, what pages they find most useful, and how they arrived at To learn more about Google Analytics and your data, visit this Google webpage.

How to control cookie settings

Most web browsers allow you to control cookies through their settings preferences, however if you limit the ability of websites to set cookies, you may impact your overall user experience.

Below you can learn about how to control cookie settings on popular web browsers:


In addition to cookies, we sometimes use small graphic images known as ‘pixels’ (also known as web beacons, clear GIFs, or pixel tags). We use pixels in our email communications to you (if you have selected to receive such communications) to help us to understand whether our email communication has been viewed. We also use third party pixels (such as those from Google, Facebook, and other advertising CAUKs) to help us provide advertising that is relevant to your interests.


CAUK is committed to protecting the security of your personal data. We use a variety of security technologies and procedures to help protect your personal data from unauthorised access, use or disclosure. For example, we store the personal data you provide on computer systems that have limited access and are in controlled facilities.

While no Service is completely secure, CAUK takes precautionary measures to help prevent information about you from loss, theft, misuse and unauthorised access, disclosure, alteration and destruction. For example, we ensure that third-parties we are engaging in and sharing personal data with enter into a information sharing agreement with us to provide adequate security measures.

Your personal information is stored on servers that are kept in a controlled environment with limited access. While we take reasonable precautions to guard personal information we collect from you, no security system is impenetrable.

You can only access your CAUK account information and our service through the use of an individual user login and password. To protect the confidentiality of personal information, you must keep your password confidential and not disclose it to any other person. Please alert us immediately if you believe your password has been misused.

How to Contact Us

If you have any questions about the use of your personal information, please send us an email to

Unless otherwise stated, CAUK is a data controller for personal data we collect through the Activities subject to this Statement. Our registered office is Unit 601 (CAUK), 20, The Grove Industrial Estate,, Dorchester, Dorset , DT1 1ST